Episode Transcript
Speaker 0
Today's episode is a personal one for me and something I don't think I've ever shared on the show before. After my son was born, I was in, for a totally unrelated postpartum appointment, And I asked about some white patches I'd noticed on my vulvar skin.
Speaker 1
Because you're one of those amazing women who actually checks down their regular. I do. I do. I do.
Speaker 0
I'm a looker. I'm a looker. And so I knew that something had changed. My OB GYN had no idea what it was, said as much in the appointment. And it took a while to figure out that it was something called lichen sclerosis. And that's a chronic skin condition that left untreated can have some really serious impacts, like change your anatomy kind of impacts.
Speaker 1
Yeah. And I've since learned permanently.
Speaker 0
Yes. Permanently. That the crazy thing is that most people, including a lot of doctors, have never even never even heard of this condition.
Speaker 1
Which is why we brought doctor Amanda Selk, a VGYN researcher and one of, if not the leading Canadian voices out there on lichen sclerosis and vulvar skin conditions. And she is on a mission to educate everyone about lichen sclerosis. Because
Speaker 0
as you learn in this episode, this condition is serious, and it can cause crazy things like itching that is unbelievable, or changes to the labia, like it flattening and disappearing or the clitoris becoming covered over. Let me
Speaker 1
say that again. Covered over. Like, my god. I can't even. And and if ignored too long, something like this can also lead to cancer.
Speaker 0
Yeah. This is why we started. This is perimenopause. This for the stuff that no one's talking about that most of us don't even know can and, you know, is a problem, and that a lot of us are quietly dealing with alone.
Speaker 1
Yeah. Let's jump right into this incredible conversation with doctor Selk.
Speaker 0
This is perimenopause. Doctor Selk, welcome. Thank you so much for joining us today. Thanks for having me. We are really excited. So are some of the other providers we work with, by the way, that you are here today to chat with us about lichen sclerosis. And, I reached out to you, on social media, Instagram, I think. You had, posted, something on social media about you trying to get a patient a prescription for lichen sclerosis. And, I felt it was very important, to to highlight, and I've had a similar experience. So, thank you for responding and thank you for being on today. Before we get into some of those, finer points, maybe you can tell us what lichen sclerosis is and why this vulvar condition has become one of your research interests.
Speaker 2
So I think that's a perfect way to start because most of my friends say they've never heard of this word until they met me and then see it on my social media. So lichen sclerosis is actually a skin condition, and it's inflammatory. And that that's an important word because inflammation can cause skin scarring. It's chronic, meaning that once you have it, you have it forever, and nobody likes to have something forever, but this is one of those things. So a chronic inflammatory skin condition. It loves the vulva, but it can happen anywhere in the body. But it's it's outside of genital area in about fifteen percent of people. It likes women more than men. So, again, it's much more common in women, but men do sometimes get it. And it occurs in up to three percent of people. So it's not an uncommon rare thing. I always say it's just commonly not well known about both in the general public and in the physician world.
Speaker 1
And is it can I sorry? Not to jump around too much, but is it it's common and yet not a lot of people know about it. So are people is it not symptomatic? Is that why people don't know that they have it? Are they walking around with it, but it's not it's laying dormant? Or
Speaker 2
So there's so many pieces to this. So no. I mean, it can be asymptomatic, but it can happen in any age group from children all the way up until postmenopausal women. Like, it's diagnosed at any age. Okay. The most common symptoms are itch or the word irritation, dryness. So, again, lots of things that happen in menopause anyways, but also itch. We know that women in general think when they have itch that they have a yeast infection. Like, this is the common, any itch or irritation is a yeast infection. And so when people come and say I have a yeast infection, I say, what do you mean? Like, what what is a yeast infection? Like, is it is it somebody get a swab and told you you have yeast, or it's some symptom? Like, it's a words that people use for all kinda genital symptoms. In the perimenopausal age group and, you know, younger women, twenties, thirties, forties, it actually presents most commonly with painless sex. So, again, it presents differently in different age groups, and it can actually and it can be asymptomatic and just cause scarring and your anatomy to disappear. So it it really it depends, and I think parts of it are women don't know about it, and other parts are doctors don't always look. They don't know what to look for. It's a dermatologic condition, but most dermatologists, many are not comfortable looking at genital skin. Some are. Some are amazing, but many aren't. Yeah. And gynecologists often don't learn about skin diseases. And then poor family doctors, like, they're amazing. They do so much, but it's a lot to learn a lot about everything. Right? Like, they're they're working so hard right now, and we really need them. And it's just more and more things for them. So
Speaker 0
Yeah. Are there are there visual symptoms as well? Does the skin look different
Speaker 2
with No. The skin yeah. Classically, it looks like pale, white, shiny skin. The textbook description is cigarette paper, but lots of people don't know what that is anymore because they're not making their own cigarette. I was like, that's pale. Like that. I'm like, people who are doing other things. But anyways, on your own. So that white shiny skin, but, again, that's not always there. It also can cause fusion over your clitoris to a point where you can't see it, and people think, oh, no. It disappeared. And then that can be gradual. Oh my goodness. Yeah. Yeah. Your lady and my Nora, the small lips, they can totally flatten out and disappear, and we have no way to bring them back once they're gone. So I'm I'm a big fan of trying to recognize I like it both of you. Wait. What did you say?
Speaker 1
Wait. What? Like, horror. We have horror looks on our face for anyone listening. Oh my god.
Speaker 2
Yeah. Well, this is why women need to know about it. So, like, if you need I go back. You asked me earlier how did I get into this completely by accident. Nobody grows up and says I'm gonna do this when I get older. But I I say I got exposed to it as part of a little bit of my gynecology training at the very end of my training accidentally. And then I started hanging around with the dermatologist who spent their entire, like, forty years in their career doing this. And so I basically found my own extra training and realized I just realized there was, like, a big underserved need here, and that's what happened. So, like, everybody in my field across the world has a story like this. Like, we all happen to work with somebody who inspired us, then here we are. So
Speaker 0
Right. So Wow. Can this
Speaker 2
so
Speaker 0
dramatic things can happen if left untreated. You mentioned Hundred percent. Yes. Losing your clitoris, which is like, what?
Speaker 2
So that's so that's one. So it doesn't disappear. It's just that you can't see it. So so it doesn't Okay. It can get covered over, but our procedures to uncover it don't work well, and the disease causes it to cover again. So so the ideal is to prevent this from happening.
Speaker 1
Can I ask you a weird question? Because a lot of women only orgasm through clitoral Stimulation. Stimulation. Thank you. So can it still be stimulated if it's been covered over or no?
Speaker 2
Yeah. Yeah. It can. So some people we so that is a bit of a controversial area in my field, and I'm actually currently doing a study about this. But, generally, what we see and in the in the sex therapy group and stuff, we find that a lot of patients, still have very good sexual function. They can use vibrators and other things because the tissue is still there. It's just not directly open. It's just hidden over. Whereas when your labia minora flatten out or stick to the sides, we don't have procedures to rebuild them. So so, you know, it it's interesting, like and it can narrow to the point the opening can narrow so much that it can become hard to pee. And these are very extreme cases. Like, many people, we treat them, it stays mild, and this doesn't happen. And and some should say to me, you know, I'm not having sex. I don't care if my vagina stays open. And I say, well, everybody needs to pee. So, like because I'm not I'm not I do do procedures where where it's open such a tiny amount that it becomes very, very difficult to pee, and, like, people are leaning forward and all these things. I'm glad I scared you both. I can see it. I
Speaker 1
just Yeah.
Speaker 0
No. No. It's good. And more people need to be scared because right? We don't know what we don't know. And So Yeah.
Speaker 2
So I think more about I I'm a big fan. The reason I'm on social media at all is not like, I I don't have any private care. I don't need any patients. I actually can't take US patients. Like, I'm too busy. So I'm I'm Yeah. And all. I wanna empower people with knowledge. And because, again, I I've tried for clinicians, and now I think, you know what? The more patients know about themselves, the better. So I try to promote self exams. Like, you know, if you look at your skin once a month, you might notice things. Now that we're going to our service cancer screening every five years for most people, I'm I think that's it's actually it's the right science, and I am very supportive of it. But I worry that no one's ever gonna look at anybody's fault ever again. And the problem is we'll get far more advanced stage things. And, also, when doctors are doing perhaps they're not looking they're not really looking at your skin. And so unless you say, hi. This has bothered me. It's like they don't notice unless it's super dramatic. Right?
Speaker 1
I was gonna say, I don't think and I don't know. I've never actually watched what my doctor's doing down there where I'm getting a pap smear, but I didn't even cross my mind that he was looking for skin conditions while he was
Speaker 2
They're not. They're not. No. One of them.
Speaker 0
Sorry, I can tell you they're not. For I have lichen sclerosis, and I, was under the care of an OB. It happened right after, the birth of my second child. And I was in for something related to related postpartum. And I said, and what are these white patches on my skin? And I don't think he would've I know he wouldn't have. I said, wait. Before we're done, what are these? He said, I don't know. And luckily, he he biopsied it, and we'd right? But scary.
Speaker 1
Sorry. So, Raquel, how are you looking with a mirror? How did you how did you find these? Like, I'm I don't look down there.
Speaker 0
Oh, I see.
Speaker 1
Need to. Oh my gosh. And I was postpartum.
Speaker 0
So I was I was postpartum, so I was looking there a lot because, there was I I was, I was one of the people who had a lot of
Speaker 1
ripping and tearing.
Speaker 0
Yes. A lot of damage. Reconstruction. Reconstruction needed. So I was looking a lot anyway, but I do but I was. I'm I'm a looker.
Speaker 1
You're a looker. Doctor, how
Speaker 2
often should
Speaker 1
we be should we be examining ourselves?
Speaker 2
I used the term, like, people are lookers or not lookers. But, yeah, I get everybody to be a looker. So how often so I think there can be a problem with looking too much. If you look too much, then you there's every you know, your skin can get you don't want people to become obsessive and thinking about it all the time. And, also, when there's subtle changes, like, you know, if you're sitting for a long time and you get red and sweaty, like, that's normal. And and there's people who obsess over their skin, so we don't want that. So I think, again, it's hard to study. We we've done studies showing that I've had people up to the age of eighty two willing to look at their skin, so I I've shown that it can be done.
Speaker 1
Oh, wow.
Speaker 2
But you wanna do it maybe about once a month, I think, is ideal. You know? And there's a group called Vulgar Cancer Awareness that they always post, like, on the first of the month. It's time to check your vulva. It's a new month.
Speaker 0
Oh. And
Speaker 1
So we should all be following them.
Speaker 2
I think it's yeah. They're great. And I I think it's again, and they same thing. Like, the person who started that was she's in the UK, and she was inspired because she went years and years with symptoms that were you know, people kept telling her she didn't have anything. And and then she presented with a cancer in the background of, like, in sclerosis.
Speaker 0
And we didn't touch on that. Sorry to interject, but that's a really important point that left untreated Left untreated. This can pro progress to cancer. Correct?
Speaker 2
Yeah. So we what we like to tell people are there three reasons to treat you. One is for symptom prevention. And, again, it's not perfect. So some people, you treat them and, actually, they never have symptoms. Like, some of them never had them to begin with. And other ones, as soon as you treat people, they feel amazing. And then they think, oh, I'm better because I feel good, and then I stop their drugs. And they often they may not have symptoms again, but that doesn't mean the disease is gone. So symptoms is one. Two is the anatomic progression that we talked about. And, again, nothing is perfect, but our topical steroid treatments are the only thing that have been shown to help prevent progression. And then about three percent of people get a well versed skin cancer with this, and we think the pathway is untreated chronic inflammation because chronic inflammation can cause cancer. And so most of the time and I diagnose, unfortunately, more cancers than many because of my practice. Many of them have never been diagnosed or they're not on appropriate treatment, And that's what a lot of other studies say too. Unfortunately, sometimes even on treatment, we get aggressive disease, but then it's better to be diagnosed early than late. And if you're looking at yourself, you're more likely to pick it up and go and And then we have to encourage people to go in and get seen because they're embarrassed and they don't wanna go in for any of these things. So there's the two sides, the educating patients it's okay to come to us and then educating clinicians this is what to look for and how to treat it.
Speaker 1
Okay.
Speaker 0
And I think that's probably a big barrier. Right? The shame. And I'm I'm a pretty, you know, I'm a looker. I'm pretty comfortable with my body, and I talk about things. And even part of Michelle and I starting, this is perimenopause. I'm like that. But I will say, you know, when I got diagnosed with this, I felt, not maybe shame for having it, but I assumed that I had done something wrong.
Speaker 2
Mhmm.
Speaker 1
And that that's why I got it.
Speaker 0
Because no one could explain to me why I got it, and I'm not even sure. Do we even know why it happens or what causes
Speaker 2
it, doctor Seth? No. So you like these words when we say it's multifactorial? That's probably, like, the the classic medicine answer. No. We know that there's genetics at play because at least fifteen percent of people have a family member, and then we can actually there's there's some studies that show specific gene things, but these are not practical ways to diagnose anybody. But, you know, there's like a like, we have a lot of mommy daughters and a lot of sisters. One American has all five sisters that have it. So we know there's Oh, wow. There's genetics there. So usually, I can say it's not dinner conversation, but it would be nice if you talk to your family about it so we can empowering people with knowledge. That's one. And so then we know there's an autoimmune component to it or at least it's common with other autoimmune skin conditions. And there are these things called t cells. And, again, this gets a little bit complicated, but we we, again, we can we can go down to that level and know that there's there's something going on with the t cells in this condition. So, again, there's an autoimmune, inflammatory, genetic component all working together. But, like, why exactly do some people who are predisposed suddenly have it and others don't are is the piece that we're missing. And it's hard because sometimes you can have animal models of diseases that make it easy to study, but we don't have, like, an animal that has, like we don't have mice with, like, in sclerosis. Like, we don't have something that we can study in that way. But at least there's more and more, I feel attention being paid to this, and we're getting places lately.
Speaker 1
And so can we talk about the treatment? What, like you've you've talked we talked a lot about the fact that there's gonna be treatment and there's the rest of your life. And what what does that treatment look like?
Speaker 2
So the standard treatment, like, that right now, what we have the best treatment is what are called topical, meaning, like, a crit skin, not oral or systemic, but just, like, locally applied steroids. And I can tell you when you hear the word steroid, we know already people are, and that's another problem. And that's what Michel Michel was telling us earlier is I you know, when you prescribe steroids, there's a lot of fear and because steroids are not all the same. And oral steroids like prednisone are have a lot of systemic side effects. Topical steroids, again, it depends how you use them. So in like in sclerosis, this is a disease that over time will thin your skin. Steroids calm the inflammation and prevent the thinning. So when people worry that their skin will get thinned, and they get told this by everybody. It's like the pharmacy schools, the GPs, like, this is what's taught. But when you look at this disease specifically, it hasn't been shown to be true. If you use the right amount of steroid in the right place properly, we don't see big side effects. We don't see skin thinning. We actually just see all positives. But trying to deal with that fear of, like, as soon as they hear it Mhmm. And then they go to the pharmacy, it goes, you can't do it. I'm like, yes. You can. So, again, there's a lot of work being done on, like, how do we do this? There's you may see other people online. Jill Krampf is another one of my colleagues in the states who does a lot of this. She published a paper with Andrew Goldstein, another big vulva person showing that all these side effects that people talk about, like, they don't really exist with lichen sclerosus. So, again, there's there's a lot of fear, and I think you guys probably see it similarly with the estrogens in the vagina. I think that's a very big analogy. It's exactly
Speaker 0
the same thing. Problem.
Speaker 2
Same branding problem, which means that my life, which is mostly prescribing topical steroids or vulva vaginal estrogen, I spend my life dealing with the, oh, I'm too scared. I can't use that. And someone told me I'll get cancer or I'll ruin my skin or you know? And they they argue. And it's hard because I just tryna help them. Right? Like, at the end of the day, I don't what do I get out of this other than trying to help people? Right? So Yeah.
Speaker 1
Well and one of our, another one of our practitioners that's been on, and who's really excited to hear you were coming on, she had an experience where she prescribed the steroid and then the pharmacist it went the doctor finally she couldn't prescribe it. Sorry. She's a naturopath. She finally convinced the doctor to prescribe it. They went to the pharmacy, and the pharmacist was like, no. I'm not filling this prescription. And,
Speaker 2
you know, it's a For a steroid?
Speaker 1
For a steroid
Speaker 2
for Yeah.
Speaker 1
Like, it's closed. Yeah.
Speaker 0
The doctor who was not confident in this scenario, but open minded and working with the naturopath as the training and skill and certification, what have you. And then the doctor was also concerned because the pharmacist was saying, no. You can't do this.
Speaker 2
Yeah. We think it's
Speaker 0
on there. Really hard.
Speaker 2
Yeah. And we say, like, everything that you Americans like to use the word off label, but, like, there's nothing actually on label for the vulva vagina at all. Like, there's not like, drugs are not, like, studied as, like, put this on your vulva. But skin is skin. Like, if you can put on your face I always say, like, if it's you can put on your face, you can put on your vulva. Like, it's hundred percent. Right? Like, people worry so much about appearance. I'm always I'm always like, so these lips are very similar. You know? Like, I have a I just laugh, but, like, this is how
Speaker 0
we get to know. Equal treatment. All of them. Yes.
Speaker 2
Well, you know, with the cleansing and over cleansing, I'm like, you don't scrub your face, do you? Like, no. Post not that one hurts. I'm like, don't scrub it. Right? Yeah. So it but these are that's both laugh, but this is how I I try to explain things to people to try and get them to understand what Yeah. I'm saying.
Speaker 0
Yeah. So awareness is obviously very important.
Speaker 2
So Yeah. And, you know, you brought up something interesting earlier I wanna talk about. You said that you were diagnosed postpartum. So the other factor the other factor that also goes with your audience because we know there's some sort of, and again, it can't be for everybody, but there is potentially an effect of the drops in estrogen on this condition. So, traditionally, it was taught that there's two peaks of diagnosis or or two peaks. You get it as a kid or you get it as postmenopausal woman. And this makes me crazy because it can happen at any age, and then people think you can't have it at another age. And it's a hundred percent not true, and you're a good example. It's just that I think that those are it's more symptomatic potentially when estrogen is low. But it and so postpartum, your estrogen drops. Yeah. And if you're breastfeeding, then you can have prolonged periods of when you have no period. And that, again, it it can make your it can either first appear then or it could be, you know, where you might have had it but not been very symptomatic and all of a sudden become symptomatic. So it's it's not always clear because you don't have a diagnosis. You might not have been looking before. So we don't always know if it just started then or if you had disease that you weren't feeling before.
Speaker 0
Fascinating. So presumably, perimenopause would also create ideal conditions for lichen sclerosis to thrive. Yes?
Speaker 2
Yeah. I think in those periods of when you have the low you know, if your periods are becoming when they become irregular and you're you're not you know, and it can cycle for years. But, again, these these classic times of diagnosis where the the little kids and then they they used to teach, which we know is wrong, is that you you can get cured, like, as you get older and it just goes away and it doesn't go away. It's and so there's been a there was a really good study in Europe where they followed like, they've kinda contacted these kids and kids with biopsies like that. We never do that anymore. But, anyways, they they grew up, so we knew they had it for sure. And they tried to find them all in the country, and they they many of them had no idea they had it, but a lot of them had symptoms. And so, again, like, you know, they weren't being treated. They didn't even know they had it. But, oh, yes. I'm suffering. So we really have to work better at, like, this can happen anytime. You don't grow out of it. It doesn't go away.
Speaker 0
Yeah. So what, you know, we we don't all have doctor Silk in our lives. We're delighted we now have you in our little, little world here. But for people who and there that's the other thing. And maybe we could have you back on at some point because there's probably I don't know how many other things that you could share knowledge about that are
Speaker 1
That women need to know about. Need
Speaker 0
to know.
Speaker 2
Skin. Just skin down there.
Speaker 0
Skin down.
Speaker 1
The skin down there.
Speaker 0
The skin down there.
Speaker 2
How what do you
Speaker 0
what are your recommendations for someone? You know, let's say my example, I went to my GP and they're like, oh, I don't know. And I didn't, you know, didn't have the gumption to pursue it further or I had some concerns, but I could Well How do you
Speaker 2
how do
Speaker 0
you get
Speaker 2
how do you get the people the treatment? So where I've you know, I I used to focus more on, and I still do, on educating clinicians. Like, I have that podcast called The Volvodyers, which was really about ways to teach more clinicians in a crazy audio format. Can you teach audio for visual skin condition? Again, it was experiment, but it worked really well. And, again, because it's public. Right? Like, I had a hundred people listen to that from a hundred and thirty five countries in the world. Like, it was really huge uptake, and I I didn't like, I covered a series, and I didn't do more because I felt like, okay. We've covered vulvar disease, and we don't have big changes in that area very often. But I pay to keep it up as an education resource. And because it's public, pay even though it wasn't aimed at the public, so, like, the language is very technical, etcetera, Lots of patients have actually learned about their skin conditions that way, and they've really empowered themselves with knowledge. And I it's always very touching to me when somebody comes in and says, like, they actually don't need to see me because they know everything already. Like, they come in and they say, I you know, I'm from some small town or exactly what you said people didn't know what I had, and then I brought this up and I asked about it. And then, you know, they at least had clinicians that were open to listening to them and sometimes, like, they were prescribed, but then they they maybe used it differently based on what they heard and read from us. And, anyways, they got themselves in a good state. Like, we have a textbook for clinicians that we agreed open. Again, open for people to read for free. Like, I just probably a little different than some of the other people you have on here because my my really, it's just like, what can I do to help educate more people? So
Speaker 1
Yeah. Which is great. What about the women that do they like, is there any language or any, tips you could give the women listening that think maybe this is a possibility for them, but they've been dismissed by their doctor? How do they do they say, hey. Listen to this podcast or read this read this free book?
Speaker 2
Or Yeah. They do that sometimes too. And I think, again, you're gonna have the paternalistic old group that might not be open, but I feel that a lot of, the, like, you know, medicine is changing. And we have a lot more, open collaborative care, and I think the training is different now than it used to be. So I I think people are open to learning, and I, again, I think more and more people are actually, like, recognizing that this is a condition and that they might not know very much about it. So so, again, empowering yourself with knowledge, I don't think it's a bad thing. The UK has a great patient website called lichen sclerosus guide dot u k dot org. And that's again, it's really good resources all and it was built with patients, which is really important. Right? Mhmm. So, again, like, how do you know like, what again, how do you use your medication? What do you do? What are the symptoms? How does it affect your life? How does it affect your sex life? How does it affect your work? Like, you know, all of these things that are very hard to do in our public system in, you know, fifteen minutes. Right?
Speaker 0
Yeah. And then yeah. Exactly. Yeah. Exactly.
Speaker 2
And then there's I like the communities for patients. Like, I actually think that support groups can be very helpful. I mean, when you have somebody who's very negative and it takes everybody down, it's hard, but there's also lots of positive stories in there.
Speaker 0
Yeah. Yeah. Of course. Good in those. I wanted to just circle back. I wanted to make sure we understood correctly in terms of the causes. We talked about genetics. There is an autoimmune component. Was there something else?
Speaker 2
Well, it's just that there's, you know, there's some the drops in estrogen at least make you Oh, the drops in estrogen. Right. The more symptomatic. And I think that's the most that we have at the moment. Yeah. You know? Yeah. I don't I don't think there's more than that at this point in time. And, again, things are changing. But that's why the treatments are about inflammation. So topical steroids are number one. There's a few other things that have been shown to be not as good. So when in the rare times we can't use steroids, there's other topical medications that we try. But I again, I think the focus should be on, I would say, ninety eight percent of people will get better with steroids if they're used the right way. And the exact drug and amount, you tweak to the person. Okay? So so there'll be a lot of, like, this is what you have to use, and it's like, no. Not necessarily. We don't have those studies. It's about chronic use, not just as needed. So regular using, but the amount that keeps you, again, having the least amount of flares of symptoms and making your and, again, if you're asymptomatic, keeping your skin looking healthy and not progressing, which can honor with photos. I'm a photo girl. But ninety nine percent of my patients agree to have photos in their charts and actually more and more now, like, you have hidden folders on your phone. We'll be like, can you take a picture for my phone so that I can show? Because you you take better pictures than I do. And then they come
Speaker 1
Well, you're coming from the right angle.
Speaker 2
Yeah. And then they they, but then they can show if I discharge people too. Right? You can take that picture. And then next year, like, they can compare. And, again, I think people need to get over their being shot and being scared and just, like, this is another body part, and, like, we are gonna all have better health for ourselves as women if we can embrace this and not be so embarrassed about it.
Speaker 1
Agreed. Absolutely. Agreed.
Speaker 0
Well said.
Speaker 1
Can I can I ask one more question? So if I go to my GP and he's like, I don't know. I I I don't know what this is. Maybe I'll refer you. Is he referring you to a derm? Is he referring you to an OB GYN? Like,
Speaker 2
what who's the best? Is there a So it depends no. It depends. So there's lots of there's derm so I would say even within both groups, not everybody learns it and not everybody's interested. And so you don't actually have to have both. You need to have somebody who is educated and interested. In some places, that's a urologist, actually.
Speaker 1
Okay.
Speaker 2
Or urogynecologist. Again, it all depends where you live. And I there are some super like, I had a family doctor who worked with me for five years, and I could tell she she, after spending time training with me, was as good as, like, any specialist anywhere. Right? Like, because she just hung out and learned. So to me, it's not necessarily the specialty. It's that they have an interest in it or at least are willing to learn and be open because you get better the more you do it.
Speaker 1
Of course. It brings
Speaker 0
up a question. Do you need can it be diagnosed clinically, like, via observation? Or do you visually, thank you. Or do you need a biopsy for an official diagnosis?
Speaker 2
You ask a question that sometimes is controversial. So in the US, where which they used to be very adamant that you had to have a biopsy, and a lot of that was based on their, health coverage for insurance and things that, like, if they didn't have so some of their drugs are very expensive compared to us and getting the right care. So it was really adamant. I do find even there, it's changing a little bit. In Canada, I think it's more you know, what how I teach it is if you have a classic textbook case, like, why are you putting somebody through a biopsy unless the patient really wants it? Like, sometimes they they don't they they feel they need it to to be at peace with this chronic diagnosis. Right? If they have very early disease where it's very hard to tell, then you don't wanna commit somebody to long term treatment and all the scary stuff without being sure. So that's a good place to do it. If you're worried about a cancer, of course, or a precancer, like, then you need a biopsy. If somebody's not getting better or their disease is behaving atypically, like, those are all reasons. And I always teach clinicians, like, you know, if you're worried, as long as the patient says it's okay, like, of course, you should biopsy a patient. Right? But when I have so many people and I'm very comfortable, I would say I only biopsy again with those ones that, you know, we're not sure very early. Like, that's my list, but I don't think it's everybody. Like, again, if you don't see it very often, it'd be better to biopsy it. Right? But, again, if somebody has sometimes people have very advanced disease. I just taught my trainees this today. Like, they have advanced disease, but, again, the person looking at the tissue under the microscope also might not be an expert, or sometimes there's things that affect their interpretation. So So sometimes they say not consistent with, like, in sclerosis, but the patient has such terrible anatomy changes. Well, they have an inflammatory skin condition and the treatment's the same, but they withhold treatment because the biopsy didn't have those words. Right? And so so these are, like, again, when you hear it's not that it doesn't mean you don't have it, and we see that with cancers too. Like, sometimes the biopsy, like, you're sure oh, like, I'm really worried about this person, and my biopsy comes back and doesn't say cancer, and I'm like, you have to biopsy them again. Like, it's I'm sure I'm still worried about you, but, like, it's not it. And and that's another miss for people. Like, those patients have already had one, didn't like it, don't want one. And then clinicians who are who are falsely reassured, but if your if your spidey sense in there is like, oh, this is bad, you gotta trust your gut and do it again.
Speaker 0
Yeah. That's
Speaker 1
great advice. Thank you.
Speaker 0
Very great advice. What does it look like, if I may, on other parts of the body, like in sclerosis?
Speaker 2
You usually just little shiny shiny white patches, and it doesn't cause cancer anywhere else in the body.
Speaker 0
Okay.
Speaker 2
And it tends to be less, like, at most itchy note. We have no cancer risks anywhere else that's been shown. I've seen it sometimes on the abdomen, on the under the breasts, arms and legs. Those are sort of more classic. I could try it out. Yeah.
Speaker 1
If I have it on my arm, do I have it on my vulva?
Speaker 2
You're more like you're way more likely to have it on the vulva and not realize it.
Speaker 1
Interesting. Because, again,
Speaker 2
if you didn't feel it or you didn't notice it or nobody looked
Speaker 0
Or you're not a looker.
Speaker 2
You're not a looker. Or a clinician's not a looker because, again, if patients don't like, when we talked about earlier, like, not looking, if you don't bring up a problem, no one we don't do exam genital exams for no reason. Right? Like, my bigger problem is when people don't look at patients who have symptoms. Like, that drives me crazy. Like, you can't Yeah. To say they have a yeast infection on the telephone or I would say there's no good virtual vulva. So during during COVID, like, when they shut the world down, it was a disaster for me. Yeah. Like, I because I can't see. Oh, I tried to do a study for that too. Like, you know, patients I tried to get, like, take your own picture and send it, but most people are too were too, that freak them out too much. Like, I'd say ninety five percent of people refuse to do that because they were just, like, horrified by the idea.
Speaker 0
They're gonna have their vulva all over the Internet or whatever.
Speaker 2
Yeah. No problem. Concerns. I think it might be better if you already had an established relationship with people and they know you and know you well, then I find they're more likely to to wanna engage in this. But but, again, what who are we we wanna help the people who don't have help. Right? Like, that that was my goal is, like, how do we help all these people that don't have a clinician? Maybe, like, you know, they could send it to us. The world shut down. It's even worse than normal. And they were like, I I'll stay on this wait list for three years rather than send you pictures.
Speaker 0
Wow. It was Oh, wow. Wow. That is bananas. We'll be sure to include all the links that we've talked about, and maybe we can get links to the resources that you have, like your podcast and, what have you. Because, you know, it's it's funny you say, you know, we're not just clinicians aren't just doing random, you know, vulvar exams. Right? And that that makes total sense. But I think also as patients and I'm you know, even as someone who's very comfortable, I'm guilty of this. I often or used to roll up to my medical provider and not really be prepared and forget about things or assume that they would just ask if it was important or right? Like, we we place a lot of expectation, I think, without realizing it on the care provider. And it's just not fair or
Speaker 2
But even, you know, it's in I I saw I mean, all these, like, doctor Facebook groups and stuff. And recently, I saw somebody, you know, post about verbal or verbal, and I I said, well, it could be any of these things. And they said, well, I I just had a pap, and they didn't say anything. So they assumed it's normal. I'm like, no. They're not looking. Like, they're not they're not that's not one of my somebody in the states with her joke is the vulva's like a small town. Everybody drives by, but nobody stops to take a look. Like you know? And I I think it's a deadline and it because you're so focused on learning learning to find that cervix. Where is it? How did you I gotta get that paprika, and they there's not this
Speaker 0
And we're thinking about the inside and
Speaker 2
the stuff in there
Speaker 1
and not
Speaker 2
How not to get the skin caught and stuff like that as opposed to what does the skin look like? You know? Can you see the clitoris? What, like, color, texture, anatomy? And and, you know, how many people like, I've seen all these people, they show up with no labia minora at all. Like, they're gone. And I think this happened over time. It didn't happen overnight. Like, I've never heard of somebody being born never having them. I'm like, I don't I don't know. Like, it's not it's not a thing that's that I think is well as a recognized thing. Like, I think chances are they slowly went away over some process. But people say, well, no one mentioned it before. No. And they they you know? It's hard if we're the first people too. Like, sometimes when they come to us, like, you know, it's they're coming to us because they want con confirmation, etcetera. But when we diagnose them, like, they've never heard anything that looks abnormal, like, they're not always there. They're not happy. I hope they are eventually. Yeah. But it's
Speaker 0
but by the time someone makes their way to you, they've gotta be pretty there's gotta be something fairly significant going on, I would think, given.
Speaker 2
Yeah. Usually, at this point. I mean, it goes up and down, but yeah. Because, like, sometimes to to try and deal with capacity, I actually, you know, you come up with different ideas of how to manage. But unless they've already seen a specialist, like, it's not really fair because there's lots of minor things that, again, lots of people can manage. Right? Mhmm. It's nice that people wanna come see me. It's nice. But but I, again, I can't fix everything for everybody. And I keep, again, trying to think about I I'm always thinking how to scale, how to train more people, what can I do, like, how how to spread this knowledge everywhere? Right?
Speaker 0
We need you doing surgeries and things that are right? Yeah. This is not to sound flippant, but, like, this is really low hanging fruit for the most part unless it's gotten,
Speaker 2
you know, a lot of people. But I have but I've had six now six gynecologists who spent entire year with me. So they have, like, a lot of extra skill set, and they've gone all over Canada. So a couple to the East Coast, a couple to other places in Ontario. So it's it's really like, I'm fully working on cloning myself. And so, you know but it it takes time. Right?
Speaker 0
And Yeah.
Speaker 2
And but, again, as as much as we can do, and BC has a similar type program. So they're also I feel like they do Western Canada, and I do Central and Eastern Canada. And
Speaker 0
Okay. And it's
Speaker 2
good because, again, as there's more of us, better for you all.
Speaker 0
Yeah. Yeah.
Speaker 1
Thank you. Thank you. Doctor Selk, what is the one thing you would love every woman to know about lichen sclerosis?
Speaker 2
Well, I I want I'm glad that you even know the name. Right? Like, I I think
Speaker 1
that's the point.
Speaker 2
But no. But it's understanding that there are conditions that can affect your skin down the down there in this way. Right? Because, like, people have no idea and also that you can get of over cancer. I think that's also important. Not not just with, like, in sclerosis, but that cancer can exist again down there. Because people always like, I never thought I could get cancer there or these symptoms because they don't realize that there's these significant problems that they don't again, with the embarrassment and I don't wanna bother anybody and I really my doctor's like, guy, I don't want him to look. I'm not comfortable. All of these things people tell me lead to delayed diagnosis, both advanced, like, in sclerosis and advanced to vulvar cancers. Like, vulvar cancer across the world, it's a slow growing cancer for most people, but cancers go in stages, one, two, three, four. Four is really bad. So vulvar cancer generally shows up as a stage three. And I always think it's a combination again. And and some of those are related to the HPV virus, but at least probably seventy percent of them are more related to, like, in sclerosis pathway.
Speaker 1
So
Speaker 2
so it's the patients that are, again, are are I think it's an embarrassment and access issue. And for clinicians, it's a under recognition and undertrained. Like, they just don't see it. Right? They don't it's Yeah. You know? So how do you how to say it? Like, so what what are warning signs for people too? Like, what are things that people should look for? So cuts that don't heal, sore hard areas that aren't going away, abnormal bleeding, you know, pain that doesn't make sense to you. Like, these are any any painful lesion. Right? Like, painful lesion could be herpes, but it also could be cancer. So so these are to me. I know that itch that doesn't get better. Right? And and, again, if you think it's yeast, you're allowed to treat it once. But if it doesn't get better, it's probably not yeast. Someone needs to look at you and do tests. And, again, if you're not getting better, maybe somebody else needs to look at you because it doesn't make sense. Right?
Speaker 0
Yeah. Yeah. Yeah. There should be no suffering when it comes to your vulvar and vagina, full stop. And also recurrence should not just be your normal. Right? Whether it's itching, UTI, right?
Speaker 2
That I just yeah.
Speaker 0
Quality of
Speaker 2
both yeah. So people are, again, are embarrassed about this part of your body, but it's such a huge important area for quality of life for all those things. Yeah. Like, if you're, like, not just sex, not just peeing, but those are both very important things for many people. But just, like, you wanna you want don't if you're itchy all the time, you are a miserable person. Right? Like, there are people that can't, like and I tell them they can't scratch. Yeah. And sometimes, you know, itch gets worse the more you scratch it. It actually makes it itchier in general. And so, you know, I've told people you can't scratch. They're like, easy for you to say. I'm like, no. You can't scratch. Like, you don't get better. And then they go to the bathroom, and they cheat because no one can see them. And it feels good to rub. So they again, I'm like, you have to sit on your hands. And these are the conversations that I have every day. And then but but, again, as you guys are giggling, they go, you actually know this. I'm like, yes. So please listen to me. Yeah.
Speaker 0
Yeah. Yeah. Yeah. No. You're giggling because you're so right. You're so right. And it's we're also, like, part of my laughter and giggling is just joy that there are people like you in this world who are, you know, taking the shame out of this. Right? And I think, like, HPV, please get vaccinated. If you have it, please don't be embarrassed or ashamed. Get treatment so that you are kept healthy and you are kept comfortable. Same with herpes. Same with lichen sclerosis. Right? There's just so much shame associated with this. And shame thrives when there's silence. And so thank you for choosing to best open that silence because it makes
Speaker 2
a difference. I I think I think that that is something I have that, you know, all of these different things. You know, I was I was torn about, and taking on another project, but this social media idea for me is because people just keep coming to me with I saw this thing on TikTok. I saw whatever. And, like, my patients are learning, and we know this. There's data about it. Right? Like, people are learning. You learn from your friends. You learn from but every and people everybody Googles or looks up I think Google, it's, like, every seven seconds, there's, like, so many health searches. Like, it's, like, the one of the top things people search for.
Speaker 1
Doctor Google.
Speaker 2
Right? But but, again, now it's also, like, all these influencers and nonmedical people giving advice, and anecdotes are very powerful. And I I think that clinicians who a lot of them are uncomfortable in this space. But, frankly, if we wanna help here, we have to be here. And, again, just this is takes over all your spare time. And I don't like people like, who does it for you? I'm like, me. And then people contact you and go, pay me. I'm like, I'm not making money doing this. I'm here just to help. And in in Canada, you can't make money doing it because we are not allowed to endorse products as physicians and keep our licenses. So in the States, it's different. So you will see all these, like, collaborations with companies. But for us, like, we eat drugs and supplements. Like, we we can completely lose our license if we endorse something. So that's also important for our Canadian audience to know. Like, your Canadian doctors, you won't see them up there saying, you know, use this thing from the store.
Speaker 0
Right. Right. Mhmm. Right. Important important information to know.
Speaker 1
Doctor Selk, thank you so incredibly much. This was such such a wonderful conversation with so much so much value in it. It was, wow, my mind is blown. Thank you.
Speaker 0
Thanks so much for listening to the show. If you like what you hear, please subscribe and write a review.
Speaker 1
So more women can find us and get a better understanding of what to expect in perimenopause.
Speaker 0
This information is not intended as medical advice. The intent of this information is to provide the listener with knowledge to support more efficient and effective communication with their medical provider.
