Christine Garvin 0:02
Hey, everybody, welcome to this week’s episode of hormonally speaking, today, we’re gonna talk about something different. I literally have never talked about this on the podcast before, which is why I’m so excited to talk about it. And also, for me to learn about it, I was just talking with my guests right beforehand, saying that I didn’t really know much about this area. And it’s so important, I think, for us to understand these things that aren’t talked about as much with women’s bodies in particular. And, you know, the struggle that a lot of women will have in getting things diagnosed, and even understanding what they are. And so you know, one of you listening out there might actually have this and not even realize it. So, I’m so excited to talk about it with today’s guests, who’s Jacqueline Lanthier, who is the founder of the Los labia Chronicles, a content hub for Lycan Sclerosis information and education. She is also a content creator, board member, facilitator, and volunteer for Lycan sclerosis support network, a nonprofit organization whose mission is to empower people with Lycan sclerosis by providing evidence based education and welcome, Jacqueline.
Well, thank you so much for having me, Christine. I’m super excited to be here.
Christine Garvin 1:15
Yes. So the thing that we’re talking about that I haven’t talked about on the podcast before is like an sclerosis. So let’s start off with what it is for people that like me don’t know.
Right? And to be fair, most people don’t know. When I was diagnosed. I was literally like, I’m sorry, What? What? What is that? Okay, so what is like in sclerosis, so lichen sclerosis is a chronic inflammatory skin disorder, that primarily affects the genitals. So the vulva, the periodontal area, and the penis as well. And for people that have penises, and you can get it on the non genital parts of your body, so you can get it to common areas tend to be like the upper arms, the chest, the thighs, so But primarily, we see it in the genitals, okay. And it is considered an autoimmune disorder, there’s still a lot of research that they need to do. But we have kind of global consensus in the medical community that it is auto immune. And they do suspect that there’s a genetic component, although they’re still working to kind of flesh out and really understand the genetic piece of that puzzle. So it’s like autoimmune, maybe genetics then might be hormones. But those tools again, right, exactly. They’re a little unclear on how those things are fitting together. So when we talk about signs and symptoms, signs are things that you can visibly see, and symptoms are things that you can feel, and this distinction actually is important when we talk about it. So, first signs, and we’re gonna talk about Valdas. So I’ve got this little vulva puppet here and love it. So this dark purple, I’m not the greatest at describing colors, but we’re gonna go with dark purple that these are like your outer lips. The inner lips are this kind of crimson e magenta color. And at the top, you have that little nub that they commonly call it. So this navy blue part is your clitoral hood. And that kind of covers or partially covers the clitoral glands which I’ve just revealed in pink here. This white inside is your vestibule area. So you have like the urethra up here. The vaginal opening here, the perineum and the anus at the bottom. Those are kind of missing on this little puppet but they’re there at the bottom. I assure you, though, when we’re talking signs what can happen is the your vulva can actually change. So the aesthetic how it looks can change. So things like hypo pigmentation can occur, which means a lightening of this skin. Now this really depends on your skin color. So it can present anywhere from like a white like a printer paper white to a kind of grayish, maybe silver, even ashy colored but it’s a lightening of this skin that you’ll experience. There are other things like scarring, so the word sclerosis actually means scarring. And scarring is something that can occur anywhere on the vulva. So scarring can be where the hood of the clitoris will actually scar over the glands. So, yeah, and a healthy vulva that you know doesn’t have any disorders or things going on. You can retract the HUD you can pull it up by making that you know upwards pulling motion for people with lichen sclerosis depending on the severity of their scarring, and a lot of people will call it few Using is it doesn’t, you can’t retract it. It doesn’t move at all right? The skin the tissue should really be elastic and mobile. But it doesn’t move. Yeah, exactly. It’s very immobile. And you know, we’ll talk about all the complications that can come with, you know, having this. But another thing that can happen is the labia menorah can start to stick together and fuse to the labia majora. Wow. And the end process of that kind of fusing, you know, is that the two can actually resorb which means that those two parts actually almost become like one so that it’s flush with the flush with the other so that if you close your eyes and ran your fingers, you would not be able to tell that you are touching two different parts. It’s almost like it completely just melts, you can also have fusing around the opening of the vagina. So that can cause narrowing of the vaginal entrance, which again, can cause you know, some issues. So there’s a lot of physical signs that doctors will kind of look out for when they’re making those diagnosis diagnoses. And when we talk about symptoms, itch and pain are the two main symptoms. But I want to dive a little bit deeper because when we are in the realm of vulva vaginal conditions, almost all of them involve an itch and pain component, right? Yeah, a yeast infection can be itchy, and it can also be painful. You know, menopause can cause itch, overactive pelvic floor can cause burning and itch and all of these things. So I want to just dive a little bit deeper into those symptoms to give a little bit more clarity. So the itch for Lycan Sclerosis is as someone that experienced it, it’s unlike any other itch. It’s not a typical yeast infection. It’s like a yeast infection on steroids. It is like I mean, people develop full on insomnia, because the itch keeps them up at night. I know people that have holes in their underwear from scratching and blood, blood, like blood and underwear because the scratching is so intense, and so unrelentless that said, not everybody has the edge or has the itch to that extent. Some people get it like mild and sporadic so sometimes they almost don’t even go to the doctor because they’ll start to feel itchy and be like, Oh, maybe I should call my doctor. Yeah, totally. And then like the next day, it’s gone. So they’re like, Okay, like I guess I guess it was nothing. So it can really be on this big spectrum of mild and sporadic to constant persistent and super severe. Pain is another really big one. Now the pain can be just feel like localized discomfort, it can feel specific to an area so some people will get pain in the clitoral area. So especially folks that have fusing, they can also feel like they have a constant feeling of like a pulling or a tightness in the area that can cause pain. And lichen sclerosis can also cause the skin to fissure and crack. So you can get fissures like kind of micro tears around the clitoral area all around this labia menorah around the perineum. People can tear more easily though tearing during sex is definitely a big one. And again, when we talk about tearing during sex, we’re often talking about the vaginal opening and the perineum. Those areas tend to be the big ones. But you can tear anywhere and you don’t need to be having sex to tear. So some people with more advanced lichen sclerosis will say that they’re walking up the stairs. And they draw walking up the stairs. Like oh man, right, it’s just like walking. So the skin tears more easily because the word like it actually means like hard, rigid, thick, and lichen sclerosis causes the skin to thicken and harden. So that scarring that we were talking about, we lose that elasticity. Because the skin isn’t elastic and mobile. It can crack super easy when we’re trying to stretch it. Yeah, I almost say like if you think about a an elastic, thin elastic, and you can stretch it really easily. But if you take like a thick elastic that you find around like broccoli, let’s say you try to stretch it. It doesn’t go very far. And so that’s what happens with lichen sclerosis skin so because it lacks that mobility and elasticity, it can tear really easily aimless acts is a really big one as well. Yeah, some people will say yeah, like some people will say oh, like they’ll feel the tears of that obviously hurts. And other people will say like it burns or it just like, you know they get like sharp pain and stinging during sex. Other people will say that sex is fine. But after they’re done sex, they’ll be burning like their vulva is on fire for weeks. So pain can really feel like stinging like little paper cuts, it can feel like it can feel like aching, and kind of just general soreness. soreness is a big one. So if people are sitting, you know, they’ll say like, oh, it just feels like so super sore, it can burn. So really a whole host of things when we’re talking about pain and age, but those seem to be like the the main kind of symptoms.
Christine Garvin 10:34
Gotcha. Can any can any tearing happen inside the vaginal canal to? Or is it mostly just the outer vulva
though? That’s a great question. Lycan sclerosis does not or in most cases almost never affects the inside, okay? So like in sclerosis affects the outside. So if there are issues inside of the vagina, it’s likely caused by a secondary condition, which could be something like hypertonic pelvic floor, which is where the muscles get super, super tight. Because if you think about it, like, if we’re experiencing pain with sex, repeatedly, it makes sense that our bodies would start to guard up to protect us, which means that if my body is doing that, and you know, I’m trying to put something inside of me, and those muscles tense up, then I can experience now pain and issues inside of the vagina, right. So a lot of times when people say stuff going on in the vagina, it’s definitely something to discuss with your healthcare provider to see what is going on on the inside because lichen sclerosis almost exclusively is affecting now it’s outside of the vagina. Yeah,
Christine Garvin 11:47
that’s good to know. And I will just add to that, that, you know, I did pelvic floor therapy after some surgeries that went wrong. And it was fascinating for me, because I didn’t even realize I had this kind of intense tightness on the left side of my vagina until the pelvic floor therapist was in there. And what was fascinating about that, too, is you hear so much about doing you know, Kegel exercises. And in my case, that’s the answer, that’s not what I should be doing essentially, you know, needs to be doing the opposite. And that was when it really opened my mind to how important pelvic floor therapy is, for you know, for every person that has a vulva, and particularly after any kind of surgery, births, giving birth, any of those things like because, I mean, the pelvic floor really holds everything up. And it’s such an important part. And when things you know, it can really make a lot of things feel very uncomfortable. If if things are, you know, tight or going wrong, and they’re so
yeah, absolutely. And it’s so it’s so true that we don’t always know that our pelvic floor is tense. Yep. A lot of people I always recommend pelvic floor physical therapy for folks that have like in sclerosis. And people are like, but why? Right, right. Like it’s on the inside? Yeah, exactly. And they’re like, Well, I don’t feel pain in my pelvic floor. And the truth is, a lot of us don’t really have a strong mind body connection to our pelvic floor. And that’s something that’s actually taught in pelvic floor physical therapy. Like, that’s kind of where I learned it. So it’s kind of normal for us to be like, Well, my pelvic floor is fine. Like, it’s not working. My issue is disconnected. Yeah. And then they go in and they do their assessment. And they’re like, well, actually, yeah, you know, your pelvic floor muscles are really tight, or they find that you’re riddled with trigger points and all of these things, and you had no idea. And again, like you said, because the pelvic floor holds all of the reproductive organs, and our bladder and our Rex and all of that, and it connects intimately to the vagina and the vulva. It’s like, well, yeah, it all makes sense. But until somebody kind of puts those pieces together for you, right? It’s kind of like, well, why would you have thought to go to pelvic floor physical therapy? Right? Condition?
Christine Garvin 14:16
Right, right. Absolutely. I’m so glad that you brought up that point. Because it is such a, an overwhelming thing, I think, for a lot of women to even start to tap into, but it’s so empowering, and to go to pelvic floor therapists, in my opinion, and you really do start to make that mind body connection and a different level. So tell us your story. And obviously, you know, you went through the process of getting diagnosed, how long did it take before you got diagnosed? What was sort of the lead up?
Yeah, so I started experiencing symptoms in my early 20s. Okay, and what I first started feeling was just discomfort during sex. I will I’ve called it exactly like pain and the like doubled over kind of sense, but just like, it kind of hurt and it just felt uncomfortable. But I was like, alright, like, not enough to make me worry just enough to make me notice. Right. And, and as I kind of moved into my 20s, that discomfort turned into pain. So it started hurting the second I was penetrated. I started experiencing like burning pain during an after. And then around my mid 20s, I also started to tear with sex. So for me, that was primarily my perineum, and the vaginal opening. Gotcha. And that was like, really, really distressing to feel or Syrians because, you know, I would talk to my friends, you know, that we’re having sex.
Christine Garvin 15:52
And we’re like, everything’s good.
No one ever mentioned, like the pain and the tearing. Definitely, no one said tearing like, that’s a word I never heard right at all. And so I was like, what’s, what’s going on here? So at this period, I would go in to different clinics. And I would be like, you know, and this is something that I’ll circle back to at the end. But I would say, my vagina hurts. My vagina hurts. I don’t know what’s going on. Give me a luck. And perhaps unexpectedly, unsurprisingly, they would do the typical, like a quick look inside. And you know, everything looks great. You are perfectly healthy, we’ll run some STI tests, just in case. Cuz that could be causing it. But otherwise, you look fine. And it’s probably because you’re very small. And your partner’s probably too big.
Christine Garvin 16:52
That tearing is just gonna happen because of that.
Basically, they made it seem like it was, you
Back then, I wasn’t very critical. Health care providers, I kind of took everyone’s word as authority
Christine Garvin 17:10
when you know, normal in your 20s. Right. Of course,
of course. You know, it’s like, okay, they went to school for this. They know better than you like, just okay, I guess I’m too small. Another thing I heard was, you’re probably really stressed. And it’s probably stressed causing the pain,
Christine Garvin 17:26
my favorite, they will put that
on everything. And it’s kind of funny, because, in part, they’re not wrong. Right. Exactly, is a huge role in almost every condition. Yeah. And, and that’s a big piece of it. But what I dislike is when they make that to be the sole cause, right? And everything is put under that because I was like, I agree. I agree. Of course. I’m stressed. Yeah. Like, why wouldn’t I be stressed? Every time I have sex? My body tears like that’s stressful. Of course, I’m stressed. Right. But also, I have a hard time understanding how stress would literally tear my body. Oh, exactly. Exactly. Yeah, that was it. And then so like, sometimes, too, they would tell me. You know, it’s probably stressed. You should try doing yoga. Yeah. That’s my favorite. thought that that was really, really funny. Because I would literally show up there. Having just left the yoga studio with my strap and my yoga mat, and I’m in my you know, Lulu.
Christine Garvin 18:28
You’re like, Why do you think I look like this? Do you? Yeah, exactly.
Like, I just live in activewear for fun. Like, I just came from yoga. Like I do these things. I do, quote the right thing. Yep. Yep. And this keeps happening to me. So fast. Right. And
Christine Garvin 18:45
I’m sorry that you went through that experience. It’s super common, unfortunately. But you know, I’m still Yeah, I know that. Yeah.
So it sucks every time. Yeah. Yeah. And then. So then I started questioning myself because then I started really doubting, like, what was going on? It was like, Is this all in my head? Like, am I literally imagining tearing right now? Like,
Christine Garvin 19:08
were you not eating from the tears too?
Sometimes? Yes. Sometimes? Yes. And I could usually tell when I would like, go to the bathroom after and I would like white. There was blood on on the thing. And I was like, okay, but it also very clearly wasn’t like menstrual blood. Yeah. There was like a difference in the red. Yeah, exactly. So I was like, hey, well, this isn’t like my period. So, you know, and I would tell them this and they’re like, Yep, you’re just really small and your partner’s too big. And I was like, Do you
Christine Garvin 19:38
know anything about women’s anatomy? I mean, come on.
These were, you know, a lot of these doctors were women, too, right? Like they weren’t, this wasn’t all like old white men telling right? That right?
Christine Garvin 19:50
It happens just as often with women. Yeah. So I was
like, okay, and I just kind of felt really hopeless. And the tearing just kept her grasping and then I would say that when I was in my 30s, like, pain became excruciating when I tried to have sex like it was now like I was like, I don’t think I can do this anymore. There’s pain is too much. And even when I wasn’t having sex, I was in pain. Because I’d had fissures all over the Volvo right fissures around the clitoral area, my labia menorah, they were everywhere. And how I described this to people is, it almost felt like someone made a like 100 paper cuts all on my vulva, and then took lemon juice or rubbing alcohol and word on top. And that’s how I felt even when I wasn’t having sex. my nervous system was obviously kind of stuck in sympathetic mode. Stress. Right, exactly. Because I was always feeling like this I was burning, I was stinging, like, moving was weird. I could never get comfortable. If anyone, you know, went out and hung out with me, they would notice I was always fidgeting in my seat, like I couldn’t sit still because it was just so uncomfortable and painful and distressing. And so part of this issue is that I did move to London, Ontario, later in my life to do graduate school. And as somebody in grad school, you’re kind of just going to the university clinic. And the university clinic has different doctors on rotation. So during this whole time, and now we’re talking 10 years, I still don’t have a diagnosis. And FYI, that’s not uncommon. The typical time it takes to get a Lycan sclerosis diagnosis is five to 15 years. Yeah. So I’m kind of falling right in the middle of this.
Christine Garvin 21:49
And I just want to say really quick that I’m so impressed. So often when I hear about chronic pain sufferers who felt like you were able to still go to school, you were able to still do it, because you I mean, we’re just strong. Like, it’s amazing, right? Under all that consistent pain. You still you did all these things in your life. So anyways.
Um, so yeah, so like, I’m in grad school. I’m doing my PhD, I’m volunteering on a crisis line, I’m working part time. And I’m losing it internally. Yeah. Because I cannot understand what’s going on with my body. Right. And so after I finished grad school, I moved to Toronto, Ontario. And that’s where I am now. So I’ve kind of settled here. And I decided like, Alright, I’m gonna get a family doctor. And hopefully now Well, I wanted a family doctor just in general, right, it isn’t important thing to have a primary care physician, it’s kind of watching over you. So I definitely knew that I needed to get one of those. And I, a couple months into moving to Toronto, had sex with my husband, and I almost lost my mind. I was like, I don’t think I can do this anymore. And for context, by the way, this is like, two months into being newlywed. Like, yeah. And I’m thinking I have to tell my husband like, I can never have sex, you know, and I was like, I need to have this conversation. But I don’t know how Yeah, so I thought I’m going to try again. I’m gonna go to a different clinic I found a clinic it was called like hassle free clinic or something. And it was kind of marketed as an STI slash just like genital health space, like anything involving the genitals. So I was like, okay, like, this is a clinic, unlike before, where I was kind of in and out general clinics. I was like, maybe a more specialist place is what I need. So I went in there, feeling hopeful that I would get some answers. I did not. What I left with was, maybe you have multiple sclerosis. And there’s nothing wrong with your vulva. Now, the multiple sclerosis thing threw me through right? A headspin as my mother had like, multiple sclerosis. Oh, wow. So I you know, and I, so I’ve always been mindful that you know, there is some kind of genetic connection, right? If you have multiple sclerosis, so then I was like, Oh, shit, but it doesn’t impact the vulva. Right? Not exactly. No. So like with multiple sclerosis, sexual dysfunction. Sexual Dysfunction is a huge umbrella term, right? So it’s kind of like, well, what does that really mean and everything and I was like, I guess it could like if my neurons weren’t transmitting, or were like transmitting in properly pain signals to the bone, maybe right. So I was a little bit nervous, but I also just felt completely hopeless at that point. And I actually gave up Yeah, I was like, 10 years and I said, That’s it. Like, I’m, this is like, I can’t do this anymore. No one can help me. It must be in my head. Yeah, I don’t know what’s wrong with me. And now I don’t know what I’m gonna do with my marriage. So I gave up. I
Christine Garvin 25:05
quick question. Were you seeing anything at that point? Were like, Were you looking at your vulva to see anything? Because that’s not something, you know, West
line and yeah, no, I
was not Yeah,
I was too afraid to look down there because I was either afraid of the horror show that I was gonna see, right? Or I was actually more afraid of seeing nothing. Because seeing nothing meant that everybody was right, that this was in my head, right? That was something that I wasn’t ready to accept, I wasn’t ready to think that my mind was so strong that it could create tearing sensations and all of these things on my body. And so I was so afraid because everyone kept saying, You look great. You look great. You look great. And I was like, Okay, well, I don’t
Christine Garvin 25:55
right there. Like, if you look specially thin on the outside, and everything’s good internally, and it’s like, no,
yes. It’s so messed up. So problematic. And so no, I was not looking. And this is like, the second piece of looking back what I wish I did. So I gave up. And then I went to see my general physician, which is primary care physician for folks listening in United States. And I went in for something completely different, like it was probably my low back, my low back pain or something completely unrelated. And then I off the cuff just mentioned something about my vulva. And my general physician was like, Well, I’m sorry, say that again. And I was like this. And she’s like, Do you have any other symptoms? And I said them all. And she said, Listen, I understand that numerous doctors have told you that there’s nothing wrong, that as your family doctor, I would like to take a look. I would like to take a look and see and be the one to say, yes, there’s nothing wrong, you’re unhealthy. You mind if I take a look at you? And I thought,
Christine Garvin 27:05
yeah, at that point, you’re like, whatever.
More Doctor looking at me down there. I’m already here. I might as well. So I went into the next room. You know, you know the drill, right? Take off the pants, get into the little stirrup into your butt down on the crinkly paper. And she walks in, and I swear, not even a second looks at my wall that goes you have Lycan sclerosis.
Christine Garvin 27:32
Actually, I knew what it was. Yeah. And I was
like, what? And then at that point, then she started to do you know, a more in depth clinical examination. So getting up front like examining the clitoris examining the labia and all of that. She goes, Yeah, this is like in sclerosis. Wow. Your whole vulva is white, like, white. And none
Christine Garvin 27:55
of these other doctors noticed this
thing. I’m like, What do you mean, I look great. And healthy. It was all white. Like, and that’s the thing, right? Like in the vulvar space, we definitely always talk about like diversity. Yep. Right. Like, some people have big inner lips. Some people have small inner lips. They come in different sizes, colors, shapes, and all of this. Yes, absolutely. And all of those are healthy. But also Yes, right. Sometimes, just having a new or different presenting Valda doesn’t always mean it’s healthy. I mean, this was white. So she goes, it’s white. And she goes your labia menorah have fused. They’re stuck to your labia majora. And she’s like and I can’t see your clitoral glands. You’re completely scarred over. And I was like, my heart was in my you know, yeah, I just I was like, I just I felt so disoriented. I was like, what is happening, right? So she goes, Okay, put your clothes back on. We’ll go back to the other room. And we’ll discuss this. So she told me all right, you have LS. It’s an autoimmune condition. We do seem to think that it runs in families. So they’re, you know, you might have somebody in your family with it. She says it can cause sexual dysfunction. And here’s a tube of steroids. Go get this prescription filled, and you’ll be on this medication. You apply it daily, and you’ll be on it for life.
Christine Garvin 29:28
Wow. What How did you feel? She said that were you like, I mean, I can imagine it was a range of emotions.
Oh, totally. I was gonna say it was like I was two different people because there was one part of me, that was the happiest I’d felt in years, right? Because it was so validating to find that there was something actually it wasn’t in my head after all. There really was tearing there really was issues and so there was that validating part. Yep. And then there was the part of me that you Just felt like someone ran over me with a truck, my eye. I was like, there’s no cure. And it causes sexual dysfunction. And those were the two pieces that I really held on to. And I went home that night cried and told my husband now for like three months, that we’d never have sex again, because I had this condition. And so, you know, looking back, I think there’s a lot of things that took it took, why it took, you know, 10 years to get diagnosed. And I think you know, one part of that is awareness. People just don’t know about it. Yeah, and gynecol and gynecology. I think they get about eight hours on vulvar conditions. On all of our conditions, people have no idea until you start digging into the research. How many of our conditions there are out though I’m sure. Ours, let’s think that maybe like in sclerosis gets 30 minutes, and then they never hear about it again. Yeah, and gynecology and obstetrics really focuses heavily on the baby aspect of it all. So, you know, these vulvar conditions, they slip through the cracks. But then another thing is, I kept saying my vagina hurts. I think that was part of the problem is that I wasn’t using the correct term to refer to my anatomy. Exactly, because I was saying vagina, no one really ever took the time to look at my vulva. They just went right in, right into the vagina, and we’re like, you look great. You look healthy, yada, yada. Now, of course,
Christine Garvin 31:35
you see the vulva. Right when you’re going in. Yeah, but that said,
I think their focus was okay. The vagina is what’s bothering her. It’s inside, when really what was going on was on the outside, right. So I wonder in hindsight of using the proper term for my anatomy, might have clued doctors in or might have at least clued them in to refer me to evolve our specialist. Right?
Christine Garvin 31:58
It’s interesting that right, because I think even now, I mean, there’s more education around it. So more women are calling it you know, calling it the vulva. But a lot of women still refer to it as the vagina, right? And so it’s kind of on the doctor to be like, Okay, I’m gonna look at the outer and inner when someone’s, you know, but I hear what you’re saying. Yeah.
Me. I wonder if you know, yeah. And then the other thing was, as you mentioned, looking down there, the importance of actually knowing what you look like, is really, really important because as I mentioned, the diversity of Volvo’s, it’s important to know your normal, because if you have a lighter vulva, that doesn’t necessarily mean that you have LS, right? So if somebody’s listening right now, and they go down, and they look at themselves, and they have a really small labia menorah, and they’re very pale down there, that’s not necessarily indicative of the fact that you have LS, that just might be your normal, right. But if your normal is pink, or brown, and now you’re white, or ashy, that’s indicative of something could be going on here. And that’s something that you want to report to your doctor. And so I wonder, you know, had I looked down there and see if I could have advocated better for myself in a doctor’s office? I mean, we’ll never know. Yeah. But you know,
Christine Garvin 33:24
yeah, it’s interesting when you think about it, because, in general, we’ve been taught societally to not look down there. You know, I mean, again, I think things are shifting now, finally, right. But for I don’t know how old you are, but you know, I’m 44. And I would say, growing up, it definitely was something that most of us did not want to look at, you know, you’re just like, whatever is happening down there. Yeah. And, and so, that is something that needs to start really young, right, flip the script on that and people that are listening, teaching their daughters and, you know, kids with Volvo’s to really start to embrace and connect now, because then you can really see, you know, what your normal is, especially at a younger age, and then, over time, see those changes?
Yeah, and it’s so important. It really, really is. I just started reading comments, you are by Emily Nagurski. And I’m like, I know I’m late to the table. I’m so late. I don’t know why it took me this long. And like her first chapter is on anatomy and like she was talking about when she was teaching how like, the first thing she would have students do is look at themselves. Get acquainted, get to know your body. It’s not gross. It’s not ugly. It’s wrong. It’s a part of you. It’s empowering to know what you look like down there. But yes, it can be very scary. And I’m 35 and the first time I looked at my Volvo was when I was diagnosed at 31.
Christine Garvin 34:54
Right, right. So I had to ask, did the steroids start working immediately too? calm things down.
So that’s a great question. Uh, for me, they did not, it actually felt like they made it worse at first. So I felt more itchy and all of this and I was like, what’s going on? And so I was actually convinced that I had vulvar cancer because I wasn’t responding to the medication because having like in sclerosis does put you at a slight increased risk of developing vulvar cancer. If you do not treat Yeah, you’re like in sclerosis. So the risk is approximately two to 7%. Okay, um, yeah. So, you know, I was like, I guess it’s full of our cancer, since I’m not responding to treatment, like, I don’t know what’s going on. But I’m in Canada. And since my family doctor diagnosed me, she had to refer me to a gynecologist. And because I’m in Canada, that wait time was nine months. Oh, my God, I had nine months to wait to really get some of my questions answered. And so, you know, I was like, I don’t know what I’m doing wrong. But I just kept applying it because I didn’t know any better. Yeah. And another thing to ask, well, that’s just it. And I also over applied because my instructions were applied daily. And I was like, Cool. I put on chapstick every day. But I put on chapstick more than once a day, I put on my chapstick, you know, three, four times a day. So I was like, I guess this just means put it on every day as much as you want. Right? I don’t know.
Christine Garvin 36:23
You’re like, I’m waiting for it to feel better.
And like, father, and I found out way later that that is very incorrect. But again, I did what I could with the knowledge that I had at the time, you know, eventually things did settle. But one thing that I always say is that my progress definitely wasn’t linear. So I would say that about like two months, two to three months, I started feeling a little bit of improvement, but then sometimes it would like shoot back down and be like, Oh, no, I’m not getting better. And then I get better than Oh, no, I’m not. And I think it really took like six months to stabilize things. And then nine months to get into remission. So when I did see that kind of colleges, he confirmed that I was in remission. Wow, I didn’t even know that was the thing that I grew. But that’s good news. Yeah, yeah. Yeah.
Christine Garvin 37:13
So did that mean that sex was easier over time, too? Or is that still an issue? If you don’t mind me?
Oh, no, Chris, that’s a great question. And I love talking about sex. So that is no, like, there’s literally no such thing as too much information for me. I even have a YouTube video. It’s a three part thing where I interview my husband, mine what this was like from his perspective, because a lot of the dialogue and the LS community is based on the patient’s perspective. But I wanted to kind of highlight what it’s like for the partner somebody with it. So when I was diagnosed, I told him or never having sex again, like, I don’t think my body can do it. And this disease causes sexual dysfunction. I assumed falsely, that having like an sclerosis meant you couldn’t have a sex life and that sex was going to be impossible. So we actually completely didn’t do anything for like a first one year. I didn’t even want like oral or anything, because I just felt so icky down there. I was just like, I don’t know. So we actually didn’t do anything. Now when I got into remission, I was almost too afraid to try.
Christine Garvin 38:26
Oh, yeah, I can imagine, right? You’re like,
that’s just a I was like, Do you know how long it took me? Like I’ve been suffering for like, 10 plus years. And I finally I’m not itching. I’m finally not having fissures. I’m finally not in pain. Yeah, I was really, really afraid. But that said, even from the beginning, I knew that I wanted to keep my sex life. I was 31 years old. Like me. Yeah. I don’t want to throw in the towel. Yeah. So I did two things. I found a sex therapist. And I worked with a pelvic floor physical therapist, because as I have low back problems, I have degenerative disc disease. I am no stranger to being in these kind of rehab centers. So I was sitting in the waiting room, you know, multiple times, and you know, you’re bored waiting for your physical therapist to come. And they usually have all everyone’s bios, like on the wall. You know, they have like each therapist and their little picture and what they treat, and I remember reading about pelvic floor physical therapy, and I was like, What the hell is that? And what’s the difference between the rest and I remember seeing that, like, they work with people with frequency and urgency problems, they work with people that have difficulty having bowel movements, painless sex, pregnancy, you name it,
Christine Garvin 39:41
I know. And like, I remember it always kind of stood out to me because I had pain was sad. Yeah. But it just, you know, didn’t kind of click until I got diagnosed. And then I was like, well, if they can treat people with pain with sex, and I have pain with sex because of Lycan sclerosis, think of probably helped me in some capacity. So they did. Um, so working with a pelvic floor physical therapist on the physical aspects to like working with dilators and kind of retraining the brain and all of that learning how to relax my pelvic floor. Also just really fostering and developing that mind body connection to my vulva to my pelvic floor was really important. And then the sex therapist, she worked with me on the mental health aspect, because now there’s a lot of trauma associated with sex. And I knew that that wasn’t something that I had the ability to overcome alone, I knew that I needed a kind of professional to help walk me through this. Yeah. So you know, I put those two pieces together and I was working on that, you know, in the, in the back for like, a whole year, you know, kind of doing that. And then I joined like in sclerosis. Lycan sclerosis podcast is hosted by Kathy and she started these virtual meetups. And I attended one. And this was in 2020, November of 2020. And something that really stood out with me for me was she asked who in the group was able or having sex and no one put their hand up? Yeah. And I was like, Oh, wow. Okay. And so the next day, she also has this like online membership. And I joined that membership. And there was a book in there by Dr. Heather Jeff coat is a pelvic floor physical therapist, that was addressing just pain and sex. So how to overcome painful sex. I printed that I read it on my lunch break. In true Student Form, you can’t break the student out of a student, I guess. I laid it and post it noted everything. I pulled my dilators out and I got to work. And I worked with those dilators. I also worked on like, you know, encouraging the parasympathetic nervous system to come online. While I was doing this work. I worked on stress I worked out, you know, really just putting all of those pieces together. Yeah, exactly. Totally. And then after about two months, I could get the biggest dilator in. And one morning, I was just like, I feel ready to do that. Yeah. I like went down the hall. And I was like, you know, it caught up to my husband. And I said, Do you want to try having sex? No expectations? Yeah. You know, like, no pressure to orgasm on either side. Like, just let’s it’s an experiment. A little experiment. Yeah. And we did. And it didn’t hurt.
Christine Garvin 42:32
Wow. And that’s the first time in like, 15 years, essentially, right? They you just hey, and so
like, right after I saw robbed, I grew right. And for me, it was just, I had no memories of sex ever being completely pain free. Right, right. And I never thought that was possible for somebody like me. And when I got that diagnosis, I especially didn’t think it was possible, right? And then even after that, you know, I went to the bathroom. And I felt all of the muscles in my in my core muscles, everything tensed up, because I’m used to it stinging, right? Because I would have a tear and so the urine would get in the cut, and it would sink. So I would like brace and there was a that’s not hurting,
Christine Garvin 43:15
you’re like, okay, buddy can relax now.
And then after that, I was like, oh, no, what if I get a flare up from this or something like that? And then it didn’t happen. I didn’t get a flare up. And then we did it again. And I didn’t have a flare up. And so now I have a great sex life. Oh, I can have sex and there’s no pain. It’s pleasurable. It did take a lot of work to get there. And yes, like it is for me anyways, very much like a holistic thing. Yeah. So you know, I use steroids. Topical steroids. By the way, for anyone listening. This is not an oral systemic. It’s a topical applied just to the vulva. And so I obviously use that to heal and maintain remission. That said, it’s never just about one thing for me personally, right? So it was like steroids and pelvic floor physical therapy and sex therapy, and, you know, relaxation and stress reduction, it was all of these things. And so, putting all of those together and just giving my Speight myself permission to allow this to take the time that it will take. Yeah, got me into that point. Because a lot of people with ALS have these big like timelines, right? They’re like, Okay, I need to be six months like I need to get better and this time, and I said, I’m gonna let my body do what it needs. I’m gonna give my body was so thankful for that. Yeah. All right. Yeah. So it was probably like, Finally, it took you long. Like, why did it take you so long? And I think that was a big part of you know, why I ended up where I ended up which is, you know, in remission, I’ve been in remission for two and a half years. No symptoms, able to have sex. I don’t fixate mentally on it anymore, like I did in the beginning. So like complete change from ah, you know, where I was
Christine Garvin 45:04
so good. So I have to ask in using the steroids, does it actually change over time the color? Or it does it? You know, I know that you said that there was fusion that had happened, does it change anything in terms of that? Right. So
what the steroids do is they actively work to reduce the local inflammation, okay. Because why LS is, is it’s a boatload of inflammation, it’s actually the single most inflammatory skin condition that you can have. And what the kind of current science tells us is that there’s essentially a protein in the basement layer of the skin. So the skin of our skin has seven layers, there’s a protein down there that the body doesn’t recognize itself. And so it starts attacking it. And that launches this massive inflammatory response. And what that response does is it changes how the top layers appear. So if you look at a biopsy, you see this hyper area of what they call hyperkeratosis, which is thickening, you see this big band of that there’s a lot of abnormal collagen, there’s all these changes, and that is responsible for changing the color because that inflammatory response kills off these cells, which are called melanocytes. melanocytes are basically the cells that are responsible for the pigmentation. So it kills those cells off in this process. And that’s responsible for at the hypo pigmentation that we see. And all of that changing. So what the steroids do is they come in, and they get that inflammation down. And we have a lot of scientific papers that look at pre and post biopsies, you know, before and then after using steroids and the reduction in inflammation is dramatic. Yeah. And it’s unmatched in terms of all the other treatment options out there. No other treatment options other than calcineurin inhibitors, which are another kind of immunosuppressant. Okay, nothing comes close to getting that inflammation down to that point. Yeah. So what does that mean for the patient perspective, the color, in most cases will return Oh, there are some rare cases where that color does not return, though some people will have like stubborn areas of whiteness, or you know, ashiness that just don’t resolve, right? And that’s just the inflammation just completely killed off the melanocytes. That doesn’t go back. Unfortunately, it doesn’t come back. But most people actually, yes, the color does come back. It is something that takes time. So like I was saying, In the beginning, where the steroids didn’t work immediately, for me, it does take time for the steroids to really start to work and reverse some of those changes. So the steroids will change the color and the texture of the skin. So the thickened texture, that heartedness that rigid, like immobile, that will start to become more flexible, and this skin texture will start to return more like normal. I don’t really like that word, but
Christine Garvin 48:08
Right. Right. So let’s kind of
Yeah, and exactly sort of what it is going to have a healthier. Yeah, exactly. Unfortunately, though, steroids cannot reverse any fusing that has occurred. Yeah,
Christine Garvin 48:24
that makes sense. Because you have to grow it back almost.
At you literally have to grow it back. So for label fusing, there’s currently not too much that can be done. But it’s horrible. Fusing their act actually is you can reverse fusing. So as I was saying I was completely scarred over. Yeah, completely. unfused my clitoris. Wow, from the steroids, not from the stereo, okay, from three or no, so it used to be well, that is an option. It used to be that the main option for confusing the clitoris was something called a lysis of adhesions, okay, lysis just means to separate adhesions is scarring or the fusing. So they kind of go in with a Dutch probe and some scissors surgical scissors, they put you under and they separate the two, there isn’t a lot of doctors don’t like to perform this is there is a tendency for patients to kind of refuse back up afterwards. And that’s why when they do agree to do the surgery, they need you to agree to be compliant with your steroids to make sure that you’re keeping the inflammation common so that you don’t fuse back up all over again. Makes sense. But then I started hearing and that’s not really an option for us in Canada, by the way, so I would have had to fly to the United States. Okay, and I was like this will end up costing me like 30,000 much money. If you think about the cost of the surgery, flights, your hotel, the food the anesthesia, the medication like That’s right. I was like that’s like low balling it. So I was like I that’s not you know, that might be in some people’s budget. It’s not in mind. Yeah. And then I started hearing about and I read a couple studies on clitoral myofascial release.
Christine Garvin 50:09
For I know, myofascial release, so
right, and I was gonna say so anyone that kind of knows, you know, physical therapy and stuff like that they’re very familiar with myofascial release, even if you’ve been in the gym, the amount of times I go to the gym and trainers are like, let me like, work on your fascia your patch is tight, you know, so I kind of knew what that was. And I was like, interesting. Um, so they start using these kind of clitoral myofascial techniques where they’re strategically kind of stretching and holding sustained stretches also doing certain movements, just trying to bring back some mobility to the skin. And, you know, doing it in different ways, it’s always good to get assessed with a therapist first because everyone’s fusing is different. So like, I have to focus more on the left side. And, you know, she gave me certain techniques to do and a pelvic floor physical therapist did teach me how to do this. And then I also heard a podcast, Kathy had interviewed Dr. Rachel Rubin, who is a huge big name in the clitoral health and ology space, right. Like she just had this big article in The New York Times. So kind of a lot of people know who she is, she actually has a non surgical lysis of adhesions, it takes about 30 minutes, it’s there in an office, they numb up the clitoral area. And basically all she’s doing is really aggressively stretching until the adhesions break up. So I actually kind of took her technique and kind of applied that to myself, adequate oral myofascial release, and I also added in, and this was experimental and off label 2%, topical testosterone. And I’m just gonna say this briefly, but what happens in the thought with testosterone, and again, this is experimental, is that this is my clitoris here buried around my hand. And so testosterone will actually grow the clitoris, it will make it bigger. So the thought is that in making it bigger, it’ll kind of burst through some of those things and free things up. So it’s not a permanent thing. You don’t use the hormones for life, right? It was a eight week thing for me. So I applied the testosterone and I use some of Dr. Rachel Rubin’s techniques along with the clitoral myofascial release that I was taught. And within six weeks, I was completely unfused
Christine Garvin 52:26
Wow, that’s incredible. I mean, that’s amazing. Yeah, is you’re talking about it, I you know, I thought about sort of the scar tissue, the adhesions that happened to me, in my, in my stomach, and yeah, I mean, so much of it is to get in there and just work on release, right and using different things. And that’s very fascinating about the testosterone. But that makes, I didn’t know that it helps the clip to grow. So I can see, pull all that together. And, and I think this is such good information. In general, people have scar tissue, or adhesions, and it doesn’t have to be the be all end all. Once you have that. And if you have any surgery, ever, you’re going to have some adhesions. That’s just what the body does. Right? And so really working consistently, like you did, and I think it’s just amazing that you were able to do that with
orals, because that was another thing. Like there was two things. I thought when I was first diagnosed, I’ll never have sex again. Yeah, and I’ll never see my clitoris. And again, like, you know, also with all of that scarring, you can experience reduced sensation.
Christine Garvin 53:34
Yeah, I was gonna say, a clitoral orgasm, I would think would be pretty hard when you have
like, I still could Yeah, it was definitely reduced. Right. So it wasn’t nearly as powerful as it once was. And now it’s kind of back to what it was. So. Wow, pretty
Christine Garvin 53:50
amazing. So we have to close it out here soon. But I do. I’m curious about at that point when you sort of I mean, you did a lot of self healing. Really, you know, I mean, I got help, but you did a lot of self healing. Did you decide then, okay, I want to help other people. How did you get into sort of the educational component?
Oh, yeah, great question. So yeah, so once I kind of, you know, got into remission and kind of was in a good place myself. Kathy from Lycan sclerosis podcast, you know, in the membership, I was always responding to everyone. Everyone that had a question. I was responding and I gave them like a book. Everyone always joked in there, oh, Jacqueline is going to write a book about Lycan sclerosis one day, and I still hope to Yeah. And Kathy was like, Well, do you want to start Oh, and then I said, Kathy had this thing where she was like, let’s set goals for 2021. And I said, I want to start writing about lichen sclerosis. So she saw that and she said, Well, I have a website. Do you want to blog? Nice, and I was like, That terrifies me. I want to do it. So it Just started out as kind of a blog and then it really quickly just morphed. And then I got my own website and created everything. But I think what it was for me was it was actually my background, my academic background that kind of really inspired me to do what I kind of do now. So I have a PhD in philosophy of neuroscience. Okay, which I know is a bit of a mouthful, but just Yeah, everyone that I said it was like, I’m sorry, we have slowly philosophy of neuroscience. Okay. What is that? Yeah. Yeah, essentially, it boils down to thinking critically about cognitive neuroscience. And so for people that don’t really know what cognitive neuroscience is, it’s just a field of science that is interested in investigating the underlying processes and mechanisms responsible for cognition. So what’s behind our ability to think and to remember what’s going on in the brain that allows us to do these things. And so my dissertation focused on the role of systematic reviews and meta analysis, for corroborating information about the mind. Again, I know that’s a little bit of, you know, a tongue twister there. But essentially, what that means is that my dissertation focused on looking at the protocols and methods in scientific papers to help determine whether we could trust the conclusion from those papers. So a lot of this was motivated by questions like what makes a good study versus, you know, a not quality study, and what makes information reliable versus unreliable. So now, kind of branching into the lichen sclerosis world, it’s a different field of science, right? It’s gynecology and dermatology. But I use those principles that I kind of, you know, fostered during my PhD. And I now apply that to Lycan sclerosis literature. So I don’t
Christine Garvin 56:58
need people doing that.
Yeah, the truth is that, you know, like I said, and I’ll try and make this quick, because I know we have to wrap things up. But when people are diagnosed, they get no answers from their doctors. So what do they do? They turn to Google, right? And Google gives them 1000s of web pages and support groups and information and studies. And it’s almost like this information, avalanche, and then people just get buried. Yep. And they don’t know, what’s the right way to dig themselves out. Yeah. So they don’t know, like, what information can I trust? And what information can’t I trust? And so for me, I was like, great, cool, like, let me apply all the knowledge that I learned, let me apply the, you know, the protocols that I developed in my PhD to kind of go through these papers and see like, what research on Lycan Sclerosis is trustworthy, and what isn’t, and then use that and help explain it in a way that is digestible and understandable for a general audience. Because otherwise, it’s like, if I’m talking about adhesions, and all of these things, a lot of people are like, I’m sorry, what? Yeah. Tell me what’s going on. Like, instead of using say, this piece sticks to this piece? Yeah. Like, you know, bring it to people in that way, like in layman’s terms, or whatever. Exactly. Exactly. And because like a no, a lot of, you know, there’s a lot of misinformation in all fields of science. Yeah. And a lot of times, that’s because people pull sentences out of context. Yes. And I always say context is everything, like people pull stuff out of context about steroids. And then that perpetuates certain myths and certain fears. And then people don’t use their medication because of a statement that wasn’t properly contextualized in the first place. Or people just read the abstract. Because in fairness, a lot of medical articles are not available to the public. They’re not open access, right? So what people get is a short abstract and maybe two sentences of a conclusion. And then they say, Well, this paper said this. Yeah. And then I say, okay, so I read that study several times. And here’s what this actually means. Yeah. And also, sometimes they’ll say, you know, a conclusion might say, platelet rich plasma is an effective treatment for lichen sclerosis. But then you pull up the actual paper, and you read that. Not really, no, not really, because the way that the study was constructed, was biased and all of these things. So it’s not that it’s a yes or a no, it’s that. That conclusion needs more research to to back it up. We don’t know enough. Yeah, right. Right. Or something like that. Right. So it’s all about being over that. Yeah. Yeah. So it’s all about those subtleties, right? It’s about context. It’s about really being able to go through that information, know whether it’s reliable or not, and then present it in a way that’s realistic. So not steroids are a cure all. They’re not they’re not a cure, and they also don’t work for everybody and there are options for people that they don’t work for. But it’s about those nuances and presenting the information in a way that people can understand. So I just thought like, this is a great merging of kind of both worlds for me. So I’m like, can
Christine Garvin 1:00:13
I bring you over the hormone world? Like, is it you know,
I would love to learn more about hormones, because we definitely think that there’s a hormonal piece to like, sclerotia. And that makes and so I’m Yeah, and so I’m getting more and more interested in that world, too. And so it’s just, yeah, now I’m just really passionate about sharing, you know, studies and sharing education with people and, you know, supporting them. I also do like one on one support calls with people, and so that they can have like, more time because the support groups are usually like, Alright, you got a couple of minutes, right? Go right. And so is the support calls, you can do 30 or 60 minutes, and I can you know, some people just be like, can you read this study and explain it to me? Yeah, other people are like, I have health anxiety, and I know you have health anxiety helped me kind of thing. And of course, I’m always very transparent with people, not a medical doctor. Yeah, I’m not a psychologist, and I cannot replace either of those two. Right. So again, like you’re about your
Christine Garvin 1:01:11
kit, slash researcher, educator. I mean, that’s such a important go between, I think, yeah,
definitely, in trying to find doctors that know these. Yeah. And I definitely also work with some doctors too, because I’m currently involved in three different research projects, internationally and in Canada with a team of gynecologist and dermatologists as a patient partner and patient rep. So I’m very, very, very, in the ls space, and very much passionate about helping people reclaim their life. Wow.
Christine Garvin 1:01:46
Amazingly possible. Yeah. So amazing. Well let people know how they can contact you.
Yeah, so my website is lost labia.com. And my blog is there, my YouTube is there. I also create content for like in sclerosis support network. So their website is Ls support network.org. So you can check out I also create content there. And if you want to reach me personally, you can either reach me via email, Jacqueline J, AC li n at last labia.com. Or you can find me at the last labia Chronicles on Instagram.
Christine Garvin 1:02:20
Nice, perfect, and we’ll make sure all that’s in the notes so people can directly get to you. This was amazing. Thank you so much for I mean, your knowledge, your expertise, really, I mean, one of the things I was thinking the whole time is how well you break everything down for people to understand. So you know, that’s definitely needed more in the health world and women’s health and everything. So I really appreciate the work that you’re doing. And I’m so happy that you know that you can be an example of coming out on the other side, right that it is possible so, so thank
you so much for having me is super honored to be here.
Christine Garvin 1:03:03
Absolutely. Okay, you guys. I will see you next week.
Transcribed by https://otter.ai