Kim (00:01.934)
Welcome Jacqueline, I'm really excited to have you on the podcast today to talk about all things lichen sclerosis. Thank you so much for joining me.
Jaclyn Lanthier (She/her) (00:10.263)
Thank you so much for having me. I've very much been looking forward to having this conversation with you.
Kim (00:15.246)
Yeah, I don't remember how I found out about you, but it's fairly recent and somebody had highlighted the work that you were doing. I think it was actually at the UBC Sexual Health Networking Day. That's where it was, yes. And first of all, I really loved the name of what you were, of what your handle, I guess. And then I took a peek at what you're doing and I just think it's fantastic. So really looking forward to this conversation. Thank you for saying yes.
Jaclyn Lanthier (She/her) (00:25.815)
yes, that would make sense. Yeah.
Jaclyn Lanthier (She/her) (00:36.311)
Yeah.
Kim (00:43.821)
I always like to have my guests kind of introduce themselves in a sense of tell us a little bit of your story and what brought you to creating the Lost Labia Chronicles and focusing a lot of what you do in lichensclerosis.
Jaclyn Lanthier (She/her) (01:01.207)
Yeah, for sure. So my journey kind of started in my early 20s where I started to notice that sex was uncomfortable. Uncomfortable is the term I would use at that point. It wasn't painful, but over the years it did. That discomfort kind of grew and evolved into what I would now say is painful. And not only that, I started to experience tearing with insertion. So if like a penis or even a tampon was tried to be inserted, I would get a tear at
the kind of foreshad perineum area of the vulva, which I always thought, this seems a little strange, you know, when I chat with my girlfriends about our sex lives, no one seems to talk about the pain and the tearing and the bleeding and all of these complications, but I just kind of kept it to myself and I would frequently go to STI clinics because the way that I received sex education, which was quite minimal, I associated anything going on in the kind of vulva vaginal region.
region was either yeast or an STI. I didn't have that typical yeast discharge and so I assumed STI. So I would go to these STI clinics, say it hurts, it burns, it stings, I can't have sex. They would run all the tests and be like, everything is negative. And I'd be like, it has to be wrong. Like this has to be wrong. And so then I started seeing gynecologists and family doctors and they would all say, no, that's normal. This happens to everyone. I was like,
I was like, really? Everybody tears open with sex? And they would say, yeah, that's normal. You just are probably a really stressed, high -stressed person, probably really type A, and maybe you should try and find people who have smaller penises. It was pretty much the advice I got for 10 years. This kept up, and the intensity of the pain, as I was mentioning, just kind of kept progressing and progressing. And I was in grad school at the time, so I didn't have a family doctor proper.
kind of going to the University Clinic which basically had a rotation of different doctors. So it was always a new doctor looking at me and by the way, I'm actually looking at me. Most of them didn't even look at my vulva and would just say like, yeah, that's normal. That's normal. You're just stressed. And so I moved to Toronto, Canada and I found, you know, this women's health, sexual health center. They seem to really have a different focus on genitopelvic issues. And so I thought,
Jaclyn Lanthier (She/her) (03:30.649)
I think I need to go here. I think I think they might actually know what's kind of going on with me And so I went it was a walk -in at this point and I was there the first person there with my coffee before they even opened so eager to get in and The doctor saw me gave me a quick exam did you know she did in fairness look at the vulva and Said yeah, you look fine. I can't do anything for you. And so sorry you came here for nothing, but
There's nothing I can do for you. And so I went to leave, you know, I got the handle and went to go leave at the office and she goes, you know, you could have multiple sclerosis though. And that really...
struck me because my mother actually had multiple sclerosis. And so I was like, no, are you kidding? This is way bigger than I thought. And she's like, yeah, but in any case, I can't help you with that. And that was it. And so at that point I thought, well, I kind of went at the highest level, what I thought was the highest level and they had nothing for me. So I kind of gave up and I left thinking, I'm not going to talk to doctors about my sexual pain anymore. I'm just not because clearly this is in my head, clearly.
I'm imagining this, there's nothing wrong with me. Like how many doctors are going to tell me that I'm just too stressed. So I gave up a couple of weeks later. I went to my family doctor and I was there for like low back pain or something. And I made a really offhand comment about my vulva. And she said, wait a minute, can we talk about that for a second? Tell me more about your vulva. And so I said, well, it hurts when I have sex, it burns. My vulva burns all the time peeing stings. I feel like I have,
paper cuts all over my vulva. Like there's a hundred little paper cuts and peeing feels like someone took rubbing alcohol and just poured it on me. I said tearing used to happen with insertion, but now I could go up a flight of stairs and I'll tear my vulva will just tear. you know, I barely move and it tears. I used to make a joke like what caused that tear? I don't know. It was windy. Like it just tore so easily. And she said, would you mind if I gave you an exam? I'd like to look at your vulva. And I was like, well,
Jaclyn Lanthier (She/her) (05:43.561)
We're already here, so let's just do it. And then, so I went into the other room, you know, got undressed from the waist down, got in the stirrup, she knocks on the door. She didn't even take three seconds before looking at my vulva and she said, Jacqueline, you have something called lichens sclerosis. Of course, I was like, I'm sorry, what? Like, what is this? I've never heard of this. And then she proceeded to do a more thorough exam explaining to me that basically my clitoral
had completely scarred over the clitoral glands that I had lost all of my inner labia, which kind of connects to what I ended up calling my whole knowledge hub later. So that labia, that inner labia was completely lost and the color was so white. Everything was white. The texture was off. And so she's explaining all this to me. And then we go back into her office and she goes, yeah, so it's autoimmune. There could be a hereditary component. It causes sex.
dysfunction and it can lead to vulvar cancer. Here's a prescription for topical, you know, clavadisole and out I went. And so I have to say receiving that diagnosis really did put me in an incredibly dark place and I fought very hard to get out of that dark place. And once I did, I started to really delve into the lichen sclerosis research. My background is in philosophy of neuroscience. I did my PhD.
looking at the different methods and protocols used in cognitive neuroscience to help us determine whether the conclusions drawn from these papers are reliable, robust, and trustworthy. So I started to just kind of apply those principles sifting through the medical articles on vulvar lichens sclerosis. And then from there, you know, I just kind of started to get really interested in lichens sclerosis as a whole. And I created my blog, well, it started as a...
blog and I called it the Lost Labia Chronicles because I had lost my labia to lichen sclerosis and that was kind of my way of taking that back, taking back that power. It was a really empowering thing for me to call it the Lost Labia Chronicles. It didn't really stay a blog for long. It kind of morphed into this knowledge sharing hub for evidence -based information and support and so now I share a lot of content through YouTube videos, ebooks, webinars, blogs.
Jaclyn Lanthier (She/her) (08:12.727)
you name it, and you know, I really focus on sharing a diversity of different content types so that it's accessible for many learning styles. So I basically went from philosophy of neuroscience to patient advocate and talking about my vulva on the internet. And here we are.
Kim (08:34.088)
That is quite the story and the, well, you did, you had that moment of kind of giving up in a sense, like, I'm not doing this anymore. And then just by complete fluke, there was this other physician who happened to say something. But still that moment, even though she very quickly recognized it, she did want to pursue, she's still sort of like, yeah, here you go, left you. And you were still left with what the hell do I do now? What is this? And.
Jaclyn Lanthier (She/her) (09:02.775)
precisely.
Kim (09:03.047)
starting your own so good and not so good. Yeah. Yeah.
Jaclyn Lanthier (She/her) (09:07.703)
I mean things we can always improve on things and you know it's it's a little challenging right because then I got a referral to a gynecologist that wait time was nine months so nine months is a long time not to know how to use your medication not to know questions about treatment not to know questions about overall care adjunctive therapies lifestyle questions are kind of just left to your own devices so that's a long time for people to wait yeah.
Kim (09:32.649)
Yeah, yeah. And that's, I'm in Canada as well and that's, it's an unfortunate part of our, I call the sick care system. It's, it's, it's challenging. It's, it's very challenging. So your, the resources you've created are incredible and, and are such an, so helpful for people who are navigating, maybe not even having the diagnosis yet, but navigating the symptoms, the signs, everything we're going to talk about. And also,
I'm sure as you found, it's hard to find reputable sources of information. The internet can be a very scary, confusing place, conflicting information, and your background kind of served you well in that way to really help you navigate and find the right information. Yeah. So what is lichensclerosis? You mentioned the word autoimmune. You talked about vulvar cancer. So what is it?
Jaclyn Lanthier (She/her) (10:21.687)
percent.
Kim (10:31.432)
What are the signs and symptoms of it?
Jaclyn Lanthier (She/her) (10:33.335)
Yeah, so lichenslerosis is a chronic inflammatory skin condition. It primarily affects the genitals, so the vulva, the perianal skin, it can affect the penis as well. And it can, in some cases, affect the extra genital skin. So some people will also have it show up on their arms, chest, abdomen, their thighs. But it does have this preference for the genital area. So at its core, it's a skin condition. Kind of interestingly sits at this intersection of dermatology and
gynecology so dermatology because it's a skin condition but because of where it's typically located a lot of us go to the gynecologist because we think volvulvaginal gynecologist so it kind of sits at that intersection. There have been a lot of recent developments in genomics research lately and that's where the autoimmune component comes in they've started to really isolate all of the cells and molecules and the whole autoimmune process that occurs in the skin that leads to
to high levels of inflammation which then causes the signs and symptoms. And so the way that I explain the difference between signs and symptoms is signs are things that we can see. So if we're looking at the vulva you're talking about color changes, texture changes, changes to the physical appearance of the vulva. And then symptoms are things that we feel in our body. So I feel itch but you can't see itch on my body. You may be able to infer it if I've been scratching and you can kind of see those scratch marks. So you
can infer from the scratch marks that maybe I'm an itchy person or am I experiencing itch but you can't typically see itch. And so in terms of signs what you're kind of looking for are texture changes. So for some people that can be really thick skin like thick plaques of skin. So if you look at the surrounding skin it looks kind of smooth and then there's this plaque of really thick raised skin. And some people it's kind of the opposite it appears a little bit more thinned out. They kind of describe it as looking
like wax paper. They used to say cigarette paper but then they're like no one knows what that is anymore so they kind of switched over to like let's say like wax parchment paper right it's thin it's glossy you know it's wrinkly so texture changes in terms of color there can be a loss of pigmentation so we all have different colored vulvas naturally but whatever your baseline color is you can start to experience a loss of pigmentation so that pigment starts to fade and the color looks lighter and lighter and lighter.
Jaclyn Lanthier (She/her) (13:02.665)
that's also going to present differently on people of different skin types, but overall it's this loss of pigmentation that you're kind of looking for. Sometimes there can be some redness. There can also be bruising. Again, the color of the bruises are going to depend on the color of your skin. It can be anywhere from like a bluish color, red, brown, et cetera. You can have blood blisters. Those are, you know, a couple of other things that can happen. And then you can also get things that, you know, we kind of call in the Alice community, archetypes.
contextual changes and these are things like fusing or Scarring so I have this little vulva puppet for anyone that's tuning in on on YouTube and basically I've got this dark Navy hood here and this little pink ball So the pink ball would be the glands clitoris and this Navy hood here would be the clitoral hood So all of our clitorises look different, right? And you know some people the glands is kind of a little bit more exposed at rest some people it hangs a little bit more over but typically
Typically if we try to retract the hood, which is to pull it upwards and back, we can kind of expose and see that glands. What happens with lichen sclerosis, because our skin is really prone to fusing and scarring, this hood can actually fuse, so stick to and scar over that glands such that if you try to retract and pull it back, nothing happens. Not only can you not visualize the glands, but it barely moves. Some people do have partial fuses.
So maybe you can see a little bit of the glands from one side like the right side, but not the left side another area that can Be impacted is the inner lips of the labia minora And that's what I was saying the lost labia chronicles, right? I lost these inner lips What happened to me was not only did they start to stick to and fuse to the outer lips, but they actually Absorbed so the labia minora basically got resorbed by the labia minora
So you can kind of no longer see, you can see maybe a color change as to where they used to be, but they've kind of just absorbed into the surrounding tissue. There can also be scarring at the opening of the vagina. And so that can happen if there's a lot of tearing. So each time you tear, scar tissue develops.
Jaclyn Lanthier (She/her) (15:19.383)
And that process, if you keep tearing more scar tissue and that can kind of build and narrow the vaginal opening. So there's a lot of different anatomical changes, scarring, fusing that can happen to the vulva. That's what we're looking for in terms of signs, in terms of symptoms. And itch can present very differently for different people. So it can be very mild, sporadic and random to constant chronic debilitating. I know people that wake up with blood under their fingernails.
because they've been scratching all night because the itch is so intense. Pain and then pain presents, you know, it's kind of this umbrella. Some people will say soreness, aching, a fullness, a tightness, a pulling. It's usually related to fusing. Some people have chronic burning. Some people have pain with insertion. Some people have tearing with insertion. And so those are some of like the main signs and symptoms that can present with lichen sclerosis. You definitely don't need to have all the signs.
all the symptoms to have it. It's really quite varied in the community in terms of how it presents. There are also asymptomatic people who are quite surprised when they go for their yearly checkup and the doctor says you have lichensfluorosis and they're like what do you mean because they don't have any itch, they don't have any pain, they don't have any sexual health issues. So they're completely taken off guard but they do have the signs. So when they're you know getting their gynecology check you know there's probably some fusing, some loss of pigmentation, some...
color changes and they're just like, what? Like that's okay, I guess. So yeah, that's pretty much like in sclerosis and in that shell.
Kim (16:57.485)
As you're describing that and thank you so much for the demo. I am also a fellow vulva puppet. I love great teaching tools. As you were demonstrating the changes, my first thought initially as you were talking about how the hood can fuse, I'm thinking from a pleasure perspective, that is one key main source of pleasure for women. How does lichen sclerosis
Jaclyn Lanthier (She/her) (17:03.703)
yes.
Kim (17:27.269)
Will it impact or influence pleasure for everyone? Can it depend on the degree of anatomical change? Does it not influence? I can't imagine that it wouldn't, but.
Jaclyn Lanthier (She/her) (17:40.215)
It definitely can influence, but not for everyone. What's interesting is that the degree of fusing doesn't necessarily dictate how you will feel sensation. So some people have full phimosis, clitoral phimosis is the medical term. So it's completely scarred over, but they actually still have sensation. So if they are, you know, stimulating that area with a finger, they can still feel it and they can certainly feel a vibrator. Some people will experience a loss of sensation. So they say it,
feels dulled, right? I feel it. I feel a finger, but it feels almost, you know, as if I'm touching my mug with a pair of like ski gloves or like really thick pair of gloves. I know it's in my hand, but I don't feel it nearly as distinctly or sharply as when I'm holding it with my bare hand. And some people have mild fusing or, you know, you can pull it back a bit. It's not fully fused, but they'll experience a significant loss of sensation. So everyone is kind of different.
But there's definitely like a pleasure aspect to the clitoral thymosis piece and a lot of people will talk about dulled orgasms, delayed orgasms, orgasm issues and just sensation issues in general.
Kim (18:54.114)
The other piece, as you were talking, was you were talking about insertion, which lots of things can be inserted. And I'm also thinking about things coming out like babies. So from a childbirth, vaginal childbirth perspective, is there evidence for greater tearing if somebody has lichen sclerosis? Is there an indication that...
I don't know of any contraindications that you couldn't give birth vaginally, but somebody maybe might choose not to, perhaps.
Jaclyn Lanthier (She/her) (19:25.271)
No. Yes.
And that's often what you see. So actually there was a recent paper published in, I believe, 2023 that kind of did a big update on pregnancy because pregnancy and vulvar lichens sclerosis research has pretty much been limited to kind of case studies or very small patient populations. You're looking at like 10 people per study. And so this one looked at, I think about 200 people with that, with vulvar lichens sclerosis who gave birth. And there was quite a lot of spontaneous vaginal births.
Those that did a C -section, most of them chose to just because they were worried about the tearing, but there's no indication of you need to do a caesarean. Most people that I know with vulvar lichens sclerosis end up doing a vaginal birth and the tearing is something similar to regular rates and degrees of tearing, although there are certainly people that will tear more severely with lichens sclerosis and that also depends on are they treating during their pregnancy, are they not treating during their pregnancy.
Are they working with a pelvic floor PT to do, you know, kind of perineum massage and prep for the birth itself? There's a lot of pieces that I think kind of play into how delivery happens, but certainly a lot of people give vaginal births and most healthcare providers will say, really, I mean, it's up to the patient to choose their mode of delivery.
Kim (20:51.007)
With regards to diagnosis, you talked about the incredibly long journey with misdiagnosis or nobody really even, the fact that nobody gave you an internal or even like an external, it boggles my mind. So anyway, you finally had one doctor who looked and as you say, very quickly she knew. What do we need to have in terms of an evaluation to receive the diagnosis of?
Jaclyn Lanthier (She/her) (21:05.591)
Yeah.
Kim (21:20.254)
of all of our lichen sclerosis.
Jaclyn Lanthier (She/her) (21:21.943)
So at bare minimum, you need a clinical examination. So technically speaking, the gold standard for diagnosis is a punch biopsy, but you can also be diagnosed via a clinical examination. So clinical examination is essentially listening to the patient's history, listening to the symptoms, and then taking the time to examine the vulvar tissues, looking for those signs of active lichen sclerosis. So looking at the texture, looking for architectural changes, for fusing, for pigmentation,
changes for stuff like that. Sometimes that's sufficient. If the doctor is well versed and very knowledgeable and comfortable in their diagnosis, then that sometimes is all it takes. Some people will just make that diagnosis clinically. So in my case, you know, the whole Volvo is white. I was completely scarred over. Like they were like, there's, there's no doubt in their minds. And actually, you know, cause you could probably talk one hour just about my whole diagnosis story, but I went to seven different doctors after begging for a biopsy. They all declined saying that my
my case was textbook like in sclerosis. There was no need to traumatize the vulvar tissue that this was such a clear and obvious case that there was no need to do the biopsy. And eventually I was just like, okay, all right, I'll drop the biopsy. So at bare minimum though, you do need to look at and examine the skin. This is really important. We saw a lot of issues during COVID with telehealth and people being diagnosed with vulvobadgenital conditions over the phone. The problem is, is that almost every vulvobadgenital condition,
itches and hurts to some capacity. When it comes to lichens sclerosis, you have to see the skin at a bare minimum. And then if you're not confident in your diagnosis, you think there's a couple of differentials, you suspect vulvar cancer, anything like that might merit a biopsy. They do biopsies a lot more in the United States also for insurance purposes because in the United States there are certain states where if you do not have biopsy proof that you have lichens sclerosis, they will not cover your medical needs.
medication. So there's always complicating factors when we think about these, but those are the two main ways that it's diagnosed.
Kim (23:30.011)
When you were seeing seven different doctors for the biopsy, was that something that you wanted confirmation for? That was sort of your pursuit to say, is it really? Is it really? Yeah.
Jaclyn Lanthier (She/her) (23:39.127)
Yeah.
Yeah, basically. And the few articles that I did read in the beginning were like, biopsy is gold standard. And I was like, OK, so I need the biopsy. And they were like, no, you don't. If we really weren't sure. Because there is also this umbrella of lichenoid conditions. So there's lichen planus, lichen sclerosis, lichen simplex chronicus. Even if there was some uncertainty as to could this be lichen planus versus lichen sclerosis, maybe a biopsy could have been done.
everybody was like, this is just so clearly like in sclerosis that there's truly no need for a biopsy. And then I just finally, yeah, I was like, all right, okay.
Kim (24:19.163)
Okay. And like in Planus, what's the differentiating factor between those two conditions? And the other one I haven't heard of before that you named the third one.
Jaclyn Lanthier (She/her) (24:29.079)
Yeah, like in simplex chronicus. So like in simplex chronicus is basically an itch scratch cycle. So anything can trigger this, say a yeast infection. So you get a yeast infection and you're itchy. If you're one of those people that just can't help but scratch, you start scratching that releases mast cells and histamines, which makes you itch more, which makes you scratch more. And then you get stuck in this itch scratch cycle. As you're scratching, you can also damage the skin. You can thicken the skin and, you know, create kind of open sores.
And so that is a little bit different insofar as it's not considered a chronic condition. It's considered more, you know, short term and they're looking more at ways to break that itch scratch cycle. And then once that's kind of broken, you just kind of go back. Lichen plant is, is very similar to lichen sclerosis. And sometimes that is when a biopsy can be helpful in order to discern the two, because there's so much overlap. It can also cause scarring to the vulva.
It can cause pain with sex. It can itch. It can look similar to especially to somebody who's not super trained in differentiating different vulva dermatoses. One difference is that lichen plantis erosive lichen plantis will go it can go into the vagina as well. So lichen sclerosis that the main consensus is that it affects the vulva the outside genitals. Now it can affect the opening of the vagina. So around there kind of at the opening but it doesn't really go.
deep into the vagina. Whereas you can find lichen planus deep in the vagina. So typically treatment is going to differ as well because you're going to be treating the vulva and the vagina. So you're going to have some extra prescriptions and some extra things that you're going to need to do. But those are kind of, you know, the main differences. We used to say that like lichen sclerosis looks more white, lichen planus erosive looks more red, but even that is not always clear cut. There can be
both. So what do you do with that? They look very similar. So sometimes a biopsy will be done. Sometimes oral -like implantis. So if somebody has oral -like implantis, then they might kind of make that connection of, okay, if they have oral -like implantis and they're complaining about symptoms in the vagina and I'm seeing redness in the vagina and all of this, they might again make a more clinical diagnosis. But sometimes a biopsy will just help kind of rule one out and make it clear. And you can have both is the other thing. So yeah.
Kim (26:57.628)
Yeah, I was just gonna ask, can you, okay, you can, okay. Okay, interesting. So, all right, we've talked signs and symptoms, diagnosis, and now treatment. We've talked a little bit about the treatment piece. So the one kind of common treatment I've heard is steroid, and it's pretty much a, you have to use steroids as a help to mitigate the risk from vulvar cancer.
Jaclyn Lanthier (She/her) (26:58.585)
Yeah, you can definitely have both.
Kim (27:25.499)
So I want clarification on that. And then the other one that I've recently been reading a little bit more literature on is PRP, which I think is super cool in many ways. But can you start with kind of the standard treatments now? And then we'll kind of go into the cooler ones.
Jaclyn Lanthier (She/her) (27:44.151)
Yeah.
Yeah, absolutely. So you're correct. The gold standard treatment is topical, topical, applied to the skin, either ultra potent or potent corticosteroids. They are typically, or it's recommended that you get it in ointment form and not cream. The cream bases have alcohol, which if you have open sores, cuts, tears, it's just going to burn. So if you're listening and you have lichen sclerosis and your provider gives you the cream, just ask them to swap for the ointment. It's prescribed where you,
treat more aggressively in terms of your dosing initially. And then you taper that dosing down to something called a maintenance protocol. And that is right now for life. So maintenance protocol is anywhere from one to three times a week. I do mine two times a week and I have done that since I've been diagnosed basically. So that is the main treatment. That's definitely the treatment that has the most evidence based behind it in terms of supporting its ability to
to calm symptoms, get patients into remission, slow the progression of the disease, and reduce the risk of vulvar cancer. To date, that treatment is the only one that suggests the decrease in developing vulvar cancer. No other treatment has been, well, we don't know, right? No other treatments have been kind of put to that test in terms of does it also reduce the risk of cancer? So right now, that's the only one that we can kind of with confidence say,
decreases that risk. And again, it just there's so much research, so many randomized control trials kind of supporting the safety and efficacy of topical corticosteroids. They're the ones that are going to reduce inflammation the most. So in order to be a treatment, you want it to address symptoms and signs, you need that inflammation to go down. So if you have high levels of inflammation, they need to see on a pre and post biopsy a serious decrease in the levels of inflammation.
Jaclyn Lanthier (She/her) (29:44.409)
need to see that go down. And steroids right now are unmatched in their abilities to do that. We've had there are randomized control trials against PRP, laser, all these other modalities, energy based regenerative medicine, and nothing else shows that statistically significant drop in inflammation other than topical corticosteroids or the second line treatment, which is topical calcineurin inhibitors. So that's also a cream applied to the skin. It's an immunomodulator also works.
to reduce that overactive immune response and subsequently reduce that inflammation. In a randomized control trial between steroids and calcineurin inhibitors, they performed quite similar. The steroids still did better at reducing inflammation, but the calcineurin inhibitors dropped it down quite significantly, enough to report a statistically significant drop. So those are kind of the two main treatments. Then you move into energy -based, that's laser, regenerative, yeah.
Kim (30:40.359)
Before we move there, sorry, I just want to interrupt before I forget this thought. Two questions. One was you said potent and ultra potent. Is that what the words that you used? What's the, like I can infer like there's more, it's a higher dose, but is that as simple as that? And how do they determine somebody that needs potent versus ultra potent?
Jaclyn Lanthier (She/her) (30:49.335)
Yeah. Yeah.
Jaclyn Lanthier (She/her) (30:55.255)
Yeah, yes, yeah, yeah, yeah.
Jaclyn Lanthier (She/her) (31:03.127)
Right.
So there's actually like a ladder of steroids, like a ladder that you climb, right? So ultra potency at the top, and then you kind of have weak at the bottom. That would be your standard kind of hydrocortisone that you could walk into any pharmacy and basically just grab off the counter. And then in the middle, you have all these different mid potency steroids. So no matter what, the truth is treatments are never one size fits all. It's never clear cut. The gold standard is clobatosol, which is ultra potent.
But truthfully, sometimes it takes some trial and error to see what potency works for the patient. I think, and this is just my opinion, that in an ideal world, providers would work very closely with patients in the beginning to see how is the skin responding to the medication and adjusting accordingly. Because for some people, ultra potent is just too strong, and all you need to do is drop them down to a mid potency, something like Triomf Sinalone, and all of a sudden they start responding, the side effects they were experiencing go away, and they start
start doing really well. strength is something that to be tailored to the ind symptoms, their signs, ho side effects that they ma course, it's never as sim in medical systems that a and you know, I, I waite into a volvar specialist that, you know, that's not that I received. But I do
be done and I think that if people are experiencing you know side effects from ultra potent to maybe come in and talk to their doctor about what if we drop it down what if we do a mid potency steroid could we try that I seem to this seems to be too strong for my skin it seems to be making me really raw and irritated and in pain could we maybe drop it down could be one way to approach that.
Kim (32:58.23)
And when I think of, you know, any time that I've, I think I've had like a hydrocortisone prescribed a couple of times in my life and it's always been used sparingly, don't use too often, it can thin the skin. So if I'm thinking about tissue that's already thin and, you know, susceptible to tearing, is that not exacerbating it to some degree?
Jaclyn Lanthier (She/her) (33:07.159)
Yeah.
Jaclyn Lanthier (She/her) (33:11.607)
Yes.
Jaclyn Lanthier (She/her) (33:22.583)
That's a great question and that's a very logical question to ask. It makes perfect sense. And in fact, my doctor, when she prescribed covadasol, told me use it, but use it very sparingly. It can thin the skin. And a lot of pharmacists tell their patients this too when they go to pick up the medicine. be careful. Some even say don't use it past two weeks. It's dangerous for the genitals, even though there's rigorous pharmacokinetic research on this showing that that's not true. But nonetheless, that's the information.
that we get. So when it comes to lichensfluorosis, lichensfluorosis is a skin deep condition. What that means is that it affects all three layers of skin. So you have the epidermis at the top, the dermis in the middle, the subcutaneous or hypodermis, that's like that basement layer. So lichensfluorosis affects every single layer of skin.
And lichenification actually means thick and sclerosis is hard, rigid, stiff. At its core, what lichen sclerosis does is it actually thickens the skin. So if you look at a sample, a biopsy sample, and you look at the kind of histopathology report, it's characterized by serious thickening. And in fact, lichen sclerosis skin, that top layer, that epidermis layer has a bunch of little layers inside. One of them is called
stratum corneum and that stratum corneum is several times thicker than non -lycansclerosis skin. So everything below, even though what we see, that top most superficial layer of the epidermis, that can appear thin to us, but all those layers immediately below are characterized very hard, very stiff, very rigid skin. In fact, that's why we tear because our vulvas lack the elasticity, that mobility to move and to accommodate.
So if I'm trying to insert something into the vagina, instead of that opening, just moving to accommodate, it doesn't know what to do. It's hard, it's thick, it's stiff. So it cracks open. And that's why we get those fissures, those cuts, those tears. And so part of it is understanding that even though what we're seeing on top is thin, the layers below are thick and those are the layers that we're trying to attack. We need that medication to go all the way down to the bottom. And to address that,
Jaclyn Lanthier (She/her) (35:43.001)
First of all, there is no studies that have actually demonstrated thin skin thinning. This is the hardest thing to say. Skin thinning from topical corticosteroids used in people with lichens sclerosis. You do see this in other skin conditions like eczema. So a lot of people infer if this happens from eczema skin, it'll happen to vulvar lichens sclerosis skin, even though again, our stratum corneum is seven times thicker than an eczema patient. But the key here is to apply your steroid optimally. So what we don't want,
Kim (35:49.3)
Yeah.
Jaclyn Lanthier (She/her) (36:12.921)
is what I was doing at first. I would squeeze some steroid out on my hand and I would plop it on the vulva like that and leave a thick layer on that top layer of skin. So what you're supposed to do or the kind of recommendation is to soak for 15 minutes prior to application to soften those thick hard layers a bit to open those pores to make it such that that medication has an easier time getting through the epidermis to the dermis all the way down to that basement layer of skin and the recommendation is also to make sure
sure that you're adequately rubbing that medication in so you're not leaving it on the surface where you may have thin skin. You're kind of moving it past and getting it down into those deeper layers where we need it to go instead of just leaving it on potentially thin skin. So a lot of those concerns can be mitigated by education about proper application and about what's going on at each layer of our skin.
Kim (37:07.604)
So interesting. One more question before we come back to the other cool therapies, but what is it that increases the risk of vulvar cancer with lichen sclerosis? And is it also, is the same risk there with lichen plainness and lichen, I'm sorry, the cortic, the other one that you said? Simplex. Simplex, yes. Thank you.
Jaclyn Lanthier (She/her) (37:11.607)
Yeah.
Jaclyn Lanthier (She/her) (37:25.047)
Lichen simplex chronicus. Yeah.
yeah, as far as I know, there's no cancer risk with lichen simplex chronicus. I'm not as certain with lichen plantis that may still be there. I know for sure with bulbar cancer, the risk is two to 6%. You'll see those statistics slightly range depending on the studies, but most systematic reviews are going to quote you at two to 6%. So what happens in the initial stages of lichen sclerosis is you have this overactive immune response in the deep layer of our skin. In that basement layer, there's basically something.
that triggers it. We're still not sure what that something is. People are, researchers speculate it could be certain medications, it could be trauma to the genital pelvic area, it could be certain infections that kind of trigger that autoimmune reaction where basically our bodies say, holy crap, that's not me and start attacking. That attack basically creates this highly, highly inflammatory response. So you've got high levels of inflammation and cellular disorganization. As that progresses, that starts changing all the layers of skin. And because like,
and sclerosis is progressive, if it's not treated, that inflammation rises, that cellular disorganization occurs, and then oxidative stress starts to happen, and then there's the down regulation of tumor suppressing genes which can occur. So basically down regulation meaning that there's less tumor suppressing genes than there should be, and the ones that are there are not doing their job optimally. They're kind of slacking a bit, right? And so all of those factors combined is what can
Kim (38:53.426)
Got it.
Jaclyn Lanthier (She/her) (38:58.009)
in some cases lead to vulvar cancer and that's why a lot of the lichen sclerosis specialists are very adamant about treating with topical corticosteroids to reduce that risk and keep folks healthy.
Kim (39:11.058)
Yeah, very cool. Okay, so now moving on to the other kind of adjunct, maybe they're not even consider adjunct therapies, I don't know, but the PRP, so the O -Shot, that is something that in the line of work that I do, many people ask me about that. The O -Shot is PRP, platelet -rich plasma, and it's offered as more kind of sexual enhancement. Off label,
Jaclyn Lanthier (She/her) (39:19.447)
Right.
Kim (39:36.658)
it's recommended as potentially not a cure, but a treatment for the management of lichen sclerosis. So that's one, I'd love to get your thoughts on that and any others that you know of that can be helpful.
Jaclyn Lanthier (She/her) (39:46.295)
Yeah.
Yeah, yeah, of course. So yeah, so platelet -rich plasma is something that definitely peaks a lot of interest. As you say, it seems more cool. I mean, it definitely sounds more interesting than a cream. For some people, it sounds pretty scary because essentially what they're doing is a clinician's gonna draw your blood.
put that in a vial, plop it into this little centrifuge machine. It's going to spin that around. And as it's spinning your blood, it's increasing platelets, which contain growth factors, which can help in tissue repair and tissue healing. If the tissue has been damaged, which clearly with lichenslerosis, there's damage to the tissue. We want that tissue to heal. So now they have your blood with those increased platelets and growth factors. They're going to put that in a syringe. They're going to numb the vulva and then they're injecting that all over.
the vulva. How many injections, where they do it exactly, that's going to basically vary per clinic and per practitioner, whoever's doing it. But that's the gist of what they're doing, which again can sound intimidating because the O -shot is typically, as you say, it's kind of marketed in this, you know, let's enhance our sexual pleasure. But if you've got someone who has lesions all over their vulva and is in excruciating pain, the thought of getting injected with a needle over and over again is not the
most enticing thing, but nonetheless there is a lot of interest in it. Unfortunately the studies do not support it as a treatment. There's just not any safety or efficacy data supporting the use of platelet -rich plasma in the context of a treatment. So what you do see in these studies is that patients do report feeling better and looking better.
Jaclyn Lanthier (She/her) (41:30.519)
And I say that, and I really want to emphasize that because that matters too. Your symptoms matter, your quality of life matters. Again, in terms of treatment, when it's put in a randomized control trial against the gold standard, which is the topical corticosteroids, the steroids bring that inflammation down significantly. PRP doesn't reduce the inflammation. So you may feel better, you may look better, but you've still got significant amounts of inflammation that we do want to reduce to reduce that pulver cancer risk.
reduce more anatomical changes to the vulva. So in some instances, it could potentially be an adjunctive therapy for some people used in conjunction with a steroid if the steroids not getting them where they want to be and they want to try platelet -rich plasma. It's more about understanding that it's not approved as a treatment per se. There's not enough safety and efficacy data to support it at this juncture. That could change. There's stem cell.
Similar results. There's a randomized control study right now being conducted in the UK looking at fat grafting That one's really interesting. So basically fat and has stem cells and adipose rich cells and you're gonna take some of that fat from one area of the body and basically put that into the vulva they're looking to see if that helps with symptoms and with sexual health symptoms in particular as well as improving the overall look of the vulva but you know, that's currently in
trials so we're not going to really know too too much about that. There's also energy -based modalities which is laser, ablative and non -ablative. Ablative is the most popular one. Most people probably know it as Mona Lisa, CO2 fractional laser. Again, some people say they look and feel better but when it's put to a randomized control trial we don't see that reduction of inflammation. So again, it's considered more of an adjunctive if anything and these can cost a lot of money so it's just important that folks know.
that it's not affecting the levels of inflammation that we want to see addressed.
Kim (43:36.002)
Is it possible to you've mentioned the word remission. So is it possible to achieve remission? What does it mean if somebody was considered to be in remission if that's possible?
Jaclyn Lanthier (She/her) (43:51.159)
Yeah, yeah. So it definitely is possible. It's a little bit complicated because when you talk about remission, most doctors are talking about clinical remission. And clinical remission means there's no signs of active life and sclerosis. So signs, which means you can still technically have symptoms in remission. In remission, you're less likely to have itch as a symptom, but you may still have sexual health symptoms or pain symptoms. And usually what's happening,
there is it's relating again to the fusing and scarring that's already occurred. So steroids are great at reducing inflammation. One thing they're not good at or they can't really do is reverse scarring that's already occurred. So let's pretend that this is the vaginal opening and we have this shelf of scar tissue here that's built up over time. Now that scar tissue is already there, but I don't have any new scar tissue. The texture overall looks good. The colors returned everything, you know, they're like, great. It's in remission.
But because that scar tissue is there, and again, scar tissue is very tough, it's thick, it's rigid, I keep tearing every time something is inserted, and so I get another tear.
which is painful, it's causing sexual health issues, it's causing pain. And so that you can still have sexual health or pain related symptoms in remission. But getting into clinical remission is definitely possible. I have been in clinical remission for four and a half years and I've also been symptom free for that four and a half years. So no sexual health symptoms. And for me it was very much like sexual health symptoms were the big symptoms I was suffering from. So I don't have any of that, no itch.
no pain, no burning, no complications. I don't really think about LS anymore, other than the work that I do, but it doesn't take up any real estate in my head the way that it used to in a negative way. So it's absolutely possible to get in remission, but it takes time and it does take patience and some trial and error. Again, like steroids, it's not a one size fits all and some people do need to combine.
Kim (45:34.802)
Amazing.
Jaclyn Lanthier (She/her) (45:56.823)
And some people do achieve remission and that missing piece was they did a couple laser sessions and now everything looks great. So it's never as clear cut as this is the only way to do it. I think there's a lot of things that we can add into our overall care and how we manage and treat to get to that point. But it takes creativity on the provider side too.
Kim (46:17.546)
Yeah. And from an autoimmune perspective, so autoimmune is a, I hadn't really thought of or really understood the word until I had an autoimmune thyroid condition, which is very common for women and, and which is Hashimoto's and, and thinking about how we go sort of from a treatment or managing autoimmune conditions, there's, there's diet and lifestyle and red light therapy and,
Jaclyn Lanthier (She/her) (46:41.719)
bright.
Kim (46:44.722)
LDN, low -dose naltrexone as a medication. So are all those things, like have you used any of those or was yours literally just the steroid cream?
Jaclyn Lanthier (She/her) (46:46.359)
Yes. Yeah.
Jaclyn Lanthier (She/her) (46:53.079)
Yeah.
Yeah, so for me I would say a big part of the heavy lifting for me was steroids.
That said, I tell everybody that I speak to with lichen sclerosis, you can throw all the steroids at your vulva, but if you are not paying attention to your stress levels, to your sleep, to all these other factors, it may not be enough. And so while I didn't make any changes to my diet because I never really noticed any connection, like there didn't seem to be like, every time I eat gluten, I itch or something like that. Like I didn't really seem to have this diet component, but I did spend a lot of time.
I'm really focusing on stress reduction techniques, on nervous system regulation, on proper sleep. I think those were the big ones for me. And then also just overall care. So using an emollient, which is basically a moisturizer for the vulva to keep that protected, soothed. And, you know, those were, those were the big things for me. Pelvic floor physical therapy was another making sure that my pelvic floor was happy and healthy. So really again, everyone's kind of overall package is going to look a little different. There are some people,
there's such a clear and obvious connection to what they're eating. I know one person that if they eat a grain of corn, like a single grain, they will itch for like three days without fail. And all that person needed to do is just stop eating corn to get their SimSims out of control. Some people it's nightshade, some people it's this, but again, it's never one size fits all, but I do think it is, you know, about thinking a little bit more outside of just our main treatment. What else can I do to support overall health and wellbeing if my mental health is struggling?
Jaclyn Lanthier (She/her) (48:30.777)
reaching out to a therapist or a counselor, someone to get that mental health support. I worked with a sex therapist for about four years. So there's all these other things that I was definitely doing to support the different facets of my life.
Kim (48:46.642)
One more question before we wrap up. I'm going a little over time. I apologize and thank you for your information. The other place my mind goes is the population that I support mostly now is the perimenopause menopause population that are now experiencing genitourinary syndrome of menopause, which is another signs and symptoms syndrome and dryness, itchy, burny, like a lot of the symptoms that you've listed.
Jaclyn Lanthier (She/her) (49:14.999)
Mm -hmm.
Kim (49:15.058)
even, even to some degree, some of the signs, like not all of them, but there can be thinning and, you know, and, and right. So, that can be confusing. And the, the gold standard here is vaginal estrogen. Is there any contraindication for vaginal estrogen with lichen sclerosis, or is it something that could also be beneficial to people with lichen sclerosis?
Jaclyn Lanthier (She/her) (49:20.727)
I agree, yeah.
Jaclyn Lanthier (She/her) (49:38.359)
Mm -hmm.
So doctors Goldstein and Kraft, they both are affiliated with the Center for Vulval Vaginal Disorders in the United States. They actually prescribe a combination of testosterone and estrogen to most patients with lichenslerosis, regardless of age. I'm 37 and I use topical estrogen as an adjunctive because basically it can really do a lot of help with respect to supporting, like you said, genitourinary symptoms if they're present, but also
the context of lichensplurosis, it can kind of plump up the skin, it can bring back elasticity and moisture to the skin. Steroids do have a slight drying effect, which is why we really want to keep it moisturized and stuff down there. So it's definitely not contraindicated and in fact a lot of people end up getting prescribed both. I think the big challenge is there's so much overlap, as you mentioned, between GSM and lichensplurosis and that causes a lot of confusion in terms of diagnosis and a lot of people come in with symptoms.
get told it's genitourinary syndrome of menopause, get a prescription for estrogen, which great!
but they also have like insularosis and that wasn't diagnosed and that's not going to be treated with estrogen. Estrogen is an adjunctive when it comes to like insularosis. It's not a treatment nor is testosterone. So it's like, that's the tricky part. And again, that's why it's so critical to get in the office in a specialist office that knows how to really look at the skin. Cause if I call you up and tell you my symptoms, it could be used, it could be GSM, it could be BV, it could be so many things. And there,
Kim (50:46.888)
Bye.
Jaclyn Lanthier (She/her) (51:16.825)
is so much overlap between LS and GSM and even to an untrained eye if the gynecologist is not super familiar, they may even miss that too. So it's really, it's a big, big challenge for sure.
Kim (51:29.352)
Yeah. You are a wealth of knowledge. Thank you so much for sharing everything with us and thank you for the work that you're doing. Where can people find you to learn more and take advantage of all the resources that you share on your website?
Jaclyn Lanthier (She/her) (51:42.999)
Yeah, of course. So I'm most active on Instagram at the Laws Labia Chronicles. I'm also on Facebook and TikTok at the Laws Labia Chronicles for all of that. And then my website is lawslabia .com. Highly recommend that anyone interested downloads my free ebook. It's over a hundred pages of evidence -based information, 40 plus peer reviewed articles went into that. And I review it yearly for any new scientific updates. So that is constantly in the works being kept fresh. So definitely folks.
can check that out and grab that on my website.
Kim (52:15.144)
That's amazing. I'll share all the links in the show notes. But thank you so much. Amazing, amazing information. This will help so many people. I really appreciate it.
Jaclyn Lanthier (She/her) (52:23.511)
Thank you so much for having me. I really appreciate it.
