Lichen Sclerosus, Scarring, Vulvar Dermatoses and Sexual Pain: with Dr. Jill Krapf

Dr Sameena Rahman (: 00:01

Hey y'all, it's me, Dr. Samina Rahman, Gyno Girl. Welcome back to another episode of Gyno Girl Presents, Sex, Drugs, and Hormones. I'm Dr. Samina Rahman. I'm super thrilled today to bring in one of my friends and colleagues I've known for quite some time to talk to you guys about a very important topic, vulvar dermatosis, which we all know is not given enough attention to. As you heard in the intro, she is vulva...

Volva Guru and so I'm so happy to have her here Dr. Jill Kraft. Thank you Jill for being here today.

Jill Krapf MD (: 00:32

Thank you for having me. I'm so excited to talk about this topic.

Dr Sameena Rahman (: 00:35

Yes, I know it's like the one that people are always pushing you to come to talk about, but I think, know, obviously you've been, you know, in this space for so long, like I've talked about, think we met, when did we meet? We met like an Ishwish conference maybe seven or eight years ago, I feel like, right?

Jill Krapf MD (: 00:48

Yes, I think it was about eight years ago. It's been a long time.

Dr Sameena Rahman (: 00:50

Yeah, for long time. We were still kind of like getting really deep into it at that point, I think. But yeah, and so we're happily we work together so well on different committees with Ishwish education. Now we're going to be in scientific committee together. And so I'm excited to have your brain involved in all that as well. So but, you know, I always like to talk about what your story is that brought you to this, because obviously we all know we all discussed the fact that

Jill Krapf MD (: 01:12

Thank you.

Dr Sameena Rahman (: 01:20

all the issues that we tackle on a day-to-day basis, whether or not it's vulva or dermatologic skin conditions or sexual pain or menopause and perimenopause management. Like it's not really something that is well taught in any capacity in medical school or residency. Although I think you and I are both trying to change the narrative on that, tell us the story about what brought you into this space.

Jill Krapf MD (: 01:44

Yes, mean, vulva dermatosus, which are basically skin conditions in the vulva, it's a tough one because you have dermatologists who are well versed in skin conditions, right? Hair, nail and skin. then you have exactly. And then you have gynecologists who are well versed in hopefully in the vulva and the vagina and the female reproductive organs. But

Dr Sameena Rahman (: 01:57

Right. Our biggest organ.

Jill Krapf MD (: 02:12

it's tough because a lot of dermatologists won't routinely look at the vulva or their practice isn't set up in that way to examine the vulva. And then gynecologists are looking at it all the time, but we often as gynecologists bypass, right, because the focus is really on getting the pap or the cervical cancer screening, which is inside the vagina, the cervix. And so we oftentimes miss a lot of these

Dr Sameena Rahman (: 02:28

That's it.

Jill Krapf MD (: 02:41

vulvar skin conditions. So how I got into it was pretty much just being at the right place at the right time. So during residency, I did my residency at George Washington University. And we had a little more exposure to these vulvar skin conditions than most programs, because there was a nurse practitioner who was very interested in like in sclerosis. And then we also had Dr. Andrew Goldstein, who is

very well versed in lichens sclerosis and vulva dermatosus as well as vulvodynia provoked vestibulodynia, all of those. And so I had exposure to both of these people. And so it was a little bit in our curriculum. But when I say in our curriculum, I mean, there was like one day or like a few lectures, right?

Dr Sameena Rahman (: 03:12

Yeah.

Jill Krapf MD (: 03:28

And with these skin conditions, the dermatologists out there all know it's all pattern recognition. You just need to see variations of the same condition over and over and over and over.

and then your eyes can't unsee it, right? So all the things that you were, yeah, it's interesting. It's like all the things that you were blind to before you start to really see as you get more exposure and experience with seeing these skin conditions. It's kind of like when you wanna buy a new car and you see that car everywhere, right? Exactly, and you're like, I didn't know there were so many of these cars on the road. So that's kind of how it is with lichen sclerosis.

Dr Sameena Rahman (: 03:42

All right, it's so true actually.

Dr Sameena Rahman (: 04:05

Yeah.

Jill Krapf MD (: 04:09

basically, you can't, you can't, and it's to the point where I have to, I know, know, and it's to the point where I have to remind myself, you know, like when I see someone who's had a misdiagnosis or a delay in diagnosis, I have to remind myself, okay, yes, like these are really hard to detect. It might not be hard for me because I see about six cases of lichen sclerosis a day, but your general gynecologist may see six in a year.

Dr Sameena Rahman (: 04:09

It's like you can't unsee labial resorption, right? Like, I'm like, wait, you don't have any labia minora. What's going on?

Dr Sameena Rahman (: 04:34

Yeah.

Dr Sameena Rahman (: 04:38

Right? Yeah.

Jill Krapf MD (: 04:38

You know, so it's really hard and plus we're not always really looking for it and some of it's more subtle and some of it's more severe. And so there's just so many presentations which make it really tricky. And then the other thing that's really tricky about skin conditions in the vulva is that there's so many overlapping skin conditions that can occur, right?

Dr Sameena Rahman (: 04:46

Right.

Dr Sameena Rahman (: 05:00

Right, right.

Jill Krapf MD (: 05:01

So you have lichen sclerosis, which is an autoimmune inflammatory skin condition that causes generally itch and skin changes like fusion and scarring. And then you have lichen planus, which is a skin condition that is like a sister or cousin to lichen sclerosis that generally affects more inside the vestibule and inside the vagina. they're similar conditions that affect two different types of tissue.

Dr Sameena Rahman (: 05:15

Right.

Jill Krapf MD (: 05:30

And then you have an itch scratch itch cycle like in simplex chronicus, which is not an autoimmune condition at all. It's basically from trauma from rubbing, scratching, creating micro abrasions, which then increase nerve formation and then leads to more itch. It's itch, scratch, itch, scratch, itch. So that can be superimposed or overlying some of these other conditions. And then you can have

bacterial or fungal conditions on top of those. So you can have yeast infection. And when I say yeast infection, everyone always thinks of clumpy white discharge. Like, you you take an antibiotic and you get a yeast infection kind of thing. But what I'm talking about is actually more like baby diaper rash. So that red scaly, yeah, vulvar perianal, we

Dr Sameena Rahman (: 06:02

Right.

Dr Sameena Rahman (: 06:17

Right, so almost, yeah.

Right? Yeah.

Jill Krapf MD (: 06:22

always forget this. We don't even look half the time. I mean, I do, but usually we don't look. I've had a lot of patients come to me and say, well, a lot of my symptoms are around the anal area. Like who looks at that? What doctor do I go to for this? Because it affects both the vulva as well as the perianal area. A lot of these conditions do. And then there's more rare conditions like plasma cell vulvitis and brushes and...

Dr Sameena Rahman (: 06:34

Yes, yes, yes, right. Yeah.

Dr Sameena Rahman (: 06:44

Right. Right.

Jill Krapf MD (: 06:51

There's a number of conditions once you get really into

Dr Sameena Rahman (: 06:51

Right.

Dr Sameena Rahman (: 06:56

Yeah, absolutely. Well, let's try to hone in on the lichens because not all lichens are the same and we all know that, those of us that do this, but I feel like sometimes you have a patient who comes in, well, have lichens. They don't know which one. Obviously, by the time you look at it, you could probably tell, but sometimes, obviously we can talk about the diagnosis and the treatments of some of these, which again, overlap a lot. What...

Let's just break down lichen sclerosis, because I feel like that's the one that doesn't get as much press. We have so much significant architectural changes that come with that, and really can be so debilitating. most of these are chronic conditions, but I feel like people sometimes get diagnosed, and then they don't realize that this is something they have to deal with their whole life, and maybe they can get into remission. But you should still be actively treating and working on it.

Let's walk through lichen sclerosis a little bit. You had already mentioned a little bit about it, but talk to us about what is it, how do we diagnose it, the basics.

Jill Krapf MD (: 08:03

Absolutely. Lichen sclerosis is an interesting condition because it's one of those things that most people have not even heard of unless they have either been diagnosed or they have a close friend or a family member with it. It's just not something that we ever hear about, right? And so oftentimes patients will present with itch. That is the main issue that people come in with.

But what's really interesting about lichen sclerosis is we used to believe that it only happened in two specific age groups, right? We thought that it only happened in women who were menopausal, right? So older women in their 50s, 60s, 70s, 80s. And then we knew that there was a pediatric population that had lichen sclerosis, so young kids. So what's similar about these two age groups is that they both lack

estrogen. So if you're after menopause, your ovaries aren't working, you're not ovulating, and so you're not producing estrogen. And then if you're before puberty, you're not producing estrogen. And so if you look at some of the older textbooks, or even some of the newer ones, unfortunately, it will talk about what's called a bimodal distribution, meaning a big group of people that are before puberty, and then a bigger group of people after menopause.

Dr Sameena Rahman (: 09:15

it's fine.

Jill Krapf MD (: 09:26

But the reality of the situation is that there are a lot, a ton of reproductive age women, 20s, 30s, 40s, 50s, who have lichen sclerosis. And many of those patients have been told, you're too young to have this. I've never seen this at your age. I'm hoping this narrative is changing. What's really interesting about this is that a few years ago,

Dr Sameena Rahman (: 09:45

Great.

Jill Krapf MD (: 09:55

So I was seeing patients of all ages in my office, all ages. And so I knew that it was happening in women in the middle. And so I did a internet-based study on Instagram and like through Facebook and Reddit, basically hoping to get the experience of premenopausal. So people before menopause, 20s, 30s, 40s.

Premenopausal people with like in sclerosis and what their means symptoms were both the symptoms that they experienced what bothered them the most and then what actually Led them to sought seek medical advice, right? These are three separate interesting questions I was I thought I would be lucky if I got maybe a hundred people nine hundred and ten and counting it was after that that's what we published but

Dr Sameena Rahman (: 10:44

What's the name?

Jill Krapf MD (: 10:49

almost a thousand people in this age group. And what we found is that a lot of the premenopausal women with lichen sclerosis did not have itch as their primary symptom, right? They had sexual function issues as their primary symptom due to scarring, right? So tearing within our course, narrowing of the opening of the vagina, coverage of the clitoris.

Dr Sameena Rahman (: 11:06

right? The fissuring, right?

Jill Krapf MD (: 11:16

So we're talking about pain with intercourse, decreased sexual function, decreased clitoral function, orgasm, arousal, and so forth. And so that was.

Dr Sameena Rahman (: 11:23

Right. Or that bleeding after sex that people will just assume is from the cervix and it's the fissure.

Jill Krapf MD (: 11:28

eggs, exactly spotting, bleeding, tearing, I it's traumatic. I mean, these things are traumatic. And so and so that really changed our mind frame about how we detect this condition, right? And how we think about it. And even to this day, though, I still see patients who will say, well, my doctor didn't think I had like, in sclerosis, because I didn't have itch, right. And these are patients in their 30s, right. And so

Dr Sameena Rahman (: 11:54

way.

Jill Krapf MD (: 11:58

we really do need to know that there's different presenting signs and symptoms of this condition, which can make it really tricky. And those differ in different age groups. We actually looked at lichens sclerosis in pregnancy, right? So we looked at different trimesters of pregnancy, as well as postpartum to see what the natural course was. And that was pretty new. There are only a handful of studies looking at that.

And so, but you know, the more that we get this information, the more we can support these people in their different life stages because lichen sclerosis is a lifelong condition. And so I think that that's a very important part of this. So going back to the beginning, lichen sclerosis is essentially an autoimmune inflammatory skin condition that generally affects the vulva and the perianal area.

It can affect other places in the body. It just looks different in those places. We call that extra genital, like in sclerosis. It generally looks red and patchy in other areas of the body, whereas in the vulva, it generally doesn't. It looks white. There can be some patchiness or thickening of the skin if it's active. And then there's the whole scarring part of this, which I think is...

the final frontier, I mean, that's the part that's not well addressed, right? And so the idea here is like in sclerosis, there's a protein in the bottom layer of the skin called the basement membrane. It's kind of like, I think of the skin like a seven floor apartment building with a basement on the bottom. And there's a protein in that basement that the body recognizes as not you, not self. And it brings the...

Dr Sameena Rahman (: 13:21

So warm. Yeah. Right.

Jill Krapf MD (: 13:48

immune system in your skin that kind of keeps things out, brings in inflammatory factors to fight that protein and then that causes inflammation in the basement.

And it's that inflammation, it's like smoke in the basement. It changes the way that the skin cells regenerate in the layers above. And it's those changes in regeneration that explain why people have the symptoms that they have and then why people have the signs or what your doctor sees, what we see with the vulvar exam, which is generally lack of pigmentation, so whiteness. So that inflammation attacks the pigment.

in the skin of that area. So we see white patches, thickening. So it changes the way that the cells incorporate collagen. They incorporate collagen in stiffer forms of collagen and a more haphazard distribution in the center. And that's what causes the thickening, which leads to itch. And then the very top actually thins out and the connection between the top and the middle

Dr Sameena Rahman (: 14:30

All right.

Jill Krapf MD (: 14:55

Almost has like a zipper quality like half of a zipper or the top of the castle. Those are called reedy ridges, right? Remember learning about that? And so it blunts them and so we have a bit of a shearing or fragility the skin becomes very fragile and the older term for lichen sclerosis was lichen sclerosis atrophicus, which is really interesting anybody who studied laden knows that lichen means thickening sclerosis means scarring at with

Dr Sameena Rahman (: 15:00

Yeah, I like that.

Jill Krapf MD (: 15:25

Atrophagus means with atrophy, right? Or thinning of the skin. So there's all of these processes going on, but they're all caused by the inflammation that our body is producing within the bottom layer of the skin because it's misdirected, because the immune system is not functioning in an optimal way in that specific skin location.

Dr Sameena Rahman (: 15:49

Right, can you talk a little bit? Because I feel like, you know, for the women of color who tend to get seen, they oftentimes get missed even more. That's what I often see in my office. like, you know, because the skin, obviously the skin changes are a little either more subtle or they're not, they're not thought as pronounced as much. Or, you know, people just miss it all together because of the...

lack of, I think, enough sort of photographic evidence of what happens to women of color, right? Like we don't, if you look at dermatologic textbooks, I mean, now there's one for women of color, think specifically, now, you know, historically that's not what we learn. And so I find a lot of my patients when they get examined, don't even, you know, they get told, they even get more dismissed, I would say.

Jill Krapf MD (: 16:37

Yes, and this is an issue with skin conditions everywhere on the body, but especially the vulva, we really just don't have great these images for different skin tones, but that's changing. So Dr. Sarah Cigna and I, as well as some of our colleagues are actually doing a study on this. So we're doing a study on lichen sclerosis in

black women to see what their experiences have been. But it's really going to come down to training. It's going to come down to having images of different skin tones to identify these conditions. It makes it very tricky though, because these conditions, even in the same skin tone, can present very differently. And then when you add other skin tones, it makes it even more complex, but it doesn't mean that it's not necessary. It's absolutely necessary.

Dr Sameena Rahman (: 17:23

I

Jill Krapf MD (: 17:33

because we can't miss this condition. The idea here is if you catch it early, then hopefully you would have a chance of preventing some of the long-term consequences of this, including scarring, as well as, this is a precancerous condition. So there is a risk of suemicell carcinoma or vulvar cancer with this condition. No, it's low.

It's quoted about 5 % in the literature between 4 to 7 % depending on the study that you look at but this is preventable, right? So lichensclerosis is not curable, but it's manageable. So you can't just like thyroid disease, right? Like you're not going to be able to make it go away completely but you can certainly meet the inflammation where it is with certain medications.

And we're looking at different treatment options that are constantly being studied to manage so we can prevent some of the scarring as well as some of the sexual health consequences that can occur because a lot of the sexual function issues are related to scarring. So someone can be in remission, meaning they don't have itch, they don't have the patchiness or the thickness of the skin, but the

treatments that are available, which basically address inflammation, right? They decrease. So an example would be a topical corticosteroid or topical steroids are the gold standard treatment for this condition. And that decreases inflammation, which is going to help the skin regenerate in a healthy way. Once we identify any other piece of the puzzle with the skin, right? The hormones have to be optimal, obviously.

pelvic floor can't be too tight because then you're limiting blood flow. If there's a contact dermatitis or an overlying yeast infection or a bacterial infection, all of these things need to be addressed, right? But even if you address all of that, it doesn't typically reverse the scarring that has occurred. And a topical steroid is not going to do that. It's just not what it does. It just decreases inflammation and that's all it does.

Dr Sameena Rahman (: 19:37

Yes, that's true.

Dr Sameena Rahman (: 19:46

Yes.

Jill Krapf MD (: 19:46

So I think that that's kind of where we are with treating this condition. And what's really neat is, you know, there's some advancements from an energy-based standpoint, as well as some surgical techniques that have been developed to address some of the scarring. But obviously the best thing would be to prevent it from occurring or from progressing in the first place, which would be putting our energy into sooner diagnosis.

Dr Sameena Rahman (: 20:05

getting there.

Dr Sameena Rahman (: 20:12

Right, right. Let's talk about some of those techniques, because I often get patients who come to me and they're like, can you do PRP? Can you do late? They have scarring or other issues, and so they hear about all these more novel treatments that have limited data. where do you think the next? Well, let's talk about the treatments that are there now other than steroids, and then where do you think it's going to go from here?

Jill Krapf MD (: 20:38

Yes, really interesting question. So first of all, with topical steroids, a couple things about that. Number one, it's the gold standard for a reason. It has the most robust research. Like it's not even a question. We have meta-analyses, we have systematic reviews, which are just basically taking all of these studies and putting all the data together. And it's the only treatment that has been found to reduce risk of vulvar cancer, right? And so that's, yeah, that's really, really important. You know, as

Dr Sameena Rahman (: 20:51

Bye.

Dr Sameena Rahman (: 20:58

Yes.

Dr Sameena Rahman (: 21:03

and that's very important.

Jill Krapf MD (: 21:08

physicians we want to prevent really harmful outcomes like that. And so that is, if it's preventative, then there's power behind that when it comes to the research and the literature. So that's number one. We have second line treatments like calcineurin inhibitors, which act in a similar way, just a little more targeted with that inflammatory response.

And then looking to the future, as far as topicals go, we have Jack inhibitors, which are even more targeted in the immune response. So the more targeted you get, the less side effects you're going to have as far as things like skin thinning or increased risk of superimposed infections or herpes simplex outbreaks and things like that.

Dr Sameena Rahman (: 21:58

options.

Jill Krapf MD (: 22:03

So we wanna get as targeted as possible and you can think of topical steroids as like the most broad treatment and then hopefully we can get more in tune with the actual process that's going on as we research these things. But with JAK inhibitors, there was a study that was done and that will be published. It's not published yet. It will be published. It was ended early, but it will be published.

And then there's some other things in the work. So I think we're going to see a lot of that in the next few years, which I'm really hopeful. And then.

Dr Sameena Rahman (: 22:36

The burn community has been using Jack inhibitors for some time, right?

Jill Krapf MD (: 22:40

absolutely. I mean, it's already well established for atopic dermatitis, which has similarities with lichensclerosis. It's well established for vitiligo, which is basically loss of pigment, right? Which is a part of lichensclerosis. It's just vitiligo doesn't have all that inflammation and the effects of that. So there's a...

good basis for it. And actually I was involved in some of the bench research that was done looking at the actual inflammatory process. So we collected all the biopsies, looking at the genomics, looking at genetics, looking at the inflammatory process. And that's actually how we identified JAK inhibitors as a viable option.

Dr Sameena Rahman (: 23:09

Yeah.

Jill Krapf MD (: 23:20

which was really neat. That was maybe like five years ago. And so these things are in the works. I think there's more to come. But right now the gold standard still remains a topical corticosteroid and there's a lot of different options for that. Now, as far as skin thinning, what we find is that when topical corticosteroid is applied to lichen sclerosis skin, remember lichen sclerosis skin isn't...

normal skin, right? It's skin that's constantly producing this level of inflammation. So as long as we use this tool that we have in the appropriate way, meaning frequency dosing application, if you're soaking prior or not, what have you, we can optimize that tool so it can meet the inflammation where it is and limit side effects such as skin thinning. So there's techniques in how to

do this correctly. The problem is that it's not always done correctly. And we have to be careful. Topical steroids are a tool. You can use a tool for good or you can use a tool for evil. It depends how you use the tool. Sometimes I'll tell my patients, like,

Dr Sameena Rahman (: 24:28

Yeah, that's true. Yeah. All right. Because patients get very nervous about the top. They're like, but my skin's going to think, like, your skin's thick right now. it's like a thickening that you have to...

Jill Krapf MD (: 24:38

Exactly. It just has to be used in the right way. Like I joke, like it's like a hammer. I can use a hammer to build a house or I can use a hammer to kill someone. I wouldn't do that. But it's a tool that we have. So I think that when we limit ourselves and we say, oh, I will not use this tool or I will not use anything in this toolbox, right? We're really limiting ourselves. I think that there's ways that we can use these to maximize benefit and limit side effects, just like any other medication. There's always

Dr Sameena Rahman (: 24:45

you

Jill Krapf MD (: 25:06

There's always good effects and there's not so good effects. But then, you know, when it comes to other therapies, right, because of the fear about skin thinning, it's led to development of these other therapies. The problem is a lot of them were rolled out prior to having really good evidence that they actually, number one, worked. But then the question is, well, how do they work or what do they work for?

And so, you know, if you have something that regenerates the skin, such as a CO2 laser, right, which is typically used for atrophy changes with genitourinary syndrome and menopausal GSM, that's one thing, you may feel better, you may look better, but if it's not decreasing the inflammation under the surface, then your cancer risk is still present, right? And so that's where we get a little worried with some of the experimental treatments.

like PRP, like CO2 laser, because we don't know if we're just making things look better and feel better, which there's definitely benefit to that. Don't get me wrong. But is it also decreasing our risk of further fusion? Is it also decreasing our risk of vulvar cancer? Is it actually managing the condition or is it just kind of putting a layer on top of it?

that makes it feel a little bit better. And so the most recent studies looking at laser are actually a combination, right? So we can think of these things as more adjuncts or add-ons where they're looking at topical corticosteroids with laser to see, because there's an idea, it would make sense with laser, you're creating little microperforations or like teeny little microscopic holes in the tissue and that creates enough

Dr Sameena Rahman (: 26:41

Yeah.

Jill Krapf MD (: 26:59

stimulus to allow the tissue to increase the amp up its regeneration, right? But it also makes sense if you're making little microperforations in the tissue in thick skin, and then you apply a topical steroid, guess what that's doing? It's making the steroid absorb better. And it actually may, these two things may go together to kind of help somebody get better faster. Now there's

Dr Sameena Rahman (: 27:13

and then.

Jill Krapf MD (: 27:25

You know, the only thing I have with that, and we'll see what the literature shows as it comes out, we're just not there yet. But the other thing is, you could also soften the skin by soaking in a tub or a sitz bath for 20 minutes, right? So then ethically, like, where are we? Like, you could have someone soak for 20 minutes and then apply a steroid in a correct way, or you could charge thousands of dollars for laser treatments and have them apply a steroid and get similar results, right?

Dr Sameena Rahman (: 27:51

Yes. Right. Exactly. And then, yeah, although like some patients that, you know, for them, it might be harder. I don't know. You're right. It's a balance because you don't it there. It's a predatory market in general. Women's health, right? Women's health is a very predatory market. I feel like.

Jill Krapf MD (: 28:07

Well, it's tough for both, you because I don't think the doctors are, you know, you have to understand it from both sides. You know, the patient really wants to feel better, right? And so they're going to try whatever it is. And then if they're paying a lot of money for it, of course, it's there's going to be a bit of a placebo effect as well, because they're paying for something that they think is going to make them better. And then it does. I mean, I think there's more than just placebo at a laser, but, you know, it's something to consider. And then on the doctor's end,

Dr Sameena Rahman (: 28:25

sure.

Jill Krapf MD (: 28:36

that doctor is either renting or bought that laser. I mean, it's like a hundred thousand dollar machine. And so they have to charge patients to, you know, to pay for the rent of that machine or to pay off that machine. And so they're going to want it to work as well. Everybody wants it to work. And so the problem is that it was all rolled out and advertised to physician offices and to patients before they had solid

Dr Sameena Rahman (: 29:04

data.

Jill Krapf MD (: 29:04

studies to show that it was effective or even safe because there was an actual FDA recall on it. Remember that? And so that's the problem. It's like these things are being rolled out before they were properly vetted. And so now the literature is coming out and it's looking promising, but then there's also bias in that because, you know, these are machines that like

Dr Sameena Rahman (: 29:10

Yeah. Yeah. I don't remember that yet.

Jill Krapf MD (: 29:31

we talked about with all the payment and everything. So it's very, very tricky. We all want something that's going to work, but we also have to think about cost and what it's actually treating and is it preventing more serious outcomes like vulvar cancer.

Dr Sameena Rahman (: 29:47

I agree.

And I think the difficulty is when you have those adhesions and scarring that forms and it becomes difficult to have penetrative sex or you have that recurrent fissuring that just won't go away. It's so distressing for patients or the clitoral, like complete clitoral fibrosis that inhibits orgasms or cause pain in that area. So can we talk a little bit about those surgical options so that the people listening will have an understanding of what we do for those types of adhesions and scarring?

Jill Krapf MD (: 30:18

Absolutely. And yes, it causes a lot of issue because it's really distressing when you tear every time you try to have intercourse and it bleeds and it stings and then you start to get a bit of a guarding response because who wouldn't, right? And then the muscles get really tight and it just becomes this whole thing and then avoidance, right?

Dr Sameena Rahman (: 30:33

Then your muscles bleed. Exactly. And then the muscles get jacked up.

Jill Krapf MD (: 30:43

And then with the clitoris, it's interesting because not a lot of people know that this is a source of clitoral pain. And what's very interesting is my patients that have complete coverage, we call it clitoral thimosis, when the skin, the hood of the clitoris, I like to think of it if you were wearing a hoodie, right? If you put that hoodie over your, if the clitoris, the glands clitoris that you see, if that's your head and you put that hoodie over your head, you should be able to take it off and put it back on. You should be able to,

Dr Sameena Rahman (: 31:02

Yes, sir.

Jill Krapf MD (: 31:13

pull the hood, the clitoral hood off of the clitoris to expose the clitoris. But in the case of lichen sclerosis, and everyone has a different level of scarring. Some people have no scarring, right? But in lichen sclerosis, there's a stickiness to the clitoral hood where it sticks to the clitoris or to the head. And then in some patients, it actually seals midline over the top of the clitoris.

So I find that people that have complete coverage actually don't have a lot of pain because things can't get in there, right? And I should also mention that a very large portion of these patients, we don't know the exact percentage, this is a research study that would be good, but a very large portion of these patients have completely intact clitoral function, meaning they can orgasm. Now they don't know what probably what it was like.

to ever have an uncovered clitoris. So there's that question. It's like, could their orgasms be more powerful or better or quicker? I mean, who knows? But they tend not to have pain because things don't get trapped in there if you're completely covered. Now, my patients that are in the middle, right? That have like 50 % or moderate clitoral adhesions. Those are the ones that tend to have pain, right? Because there's a stickiness. Adhesion means like the hood sticks to the clitoris.

Dr Sameena Rahman (: 32:10

Yeah, right.

Jill Krapf MD (: 32:32

And so they tend to get balled up skin cells that creep in there and then they harden and become what's called keratin pearls. It's almost like having a grain of sand in your eyeball. It's like really irritating. But what's really interesting when you ask patients, they typically won't bring it up with you. Sometimes what I will do is we'll do the exam and I'll see that they have moderate clitoral adhesions or halfway clitoral fomosis, right? And I'll say,

I'll touch with the q tip and they'll be like, that doesn't feel great. And I was like, Do you do you have clitoral pain? And they're like, No. And I was like, Well, how is receptive oral sex for you? They're like, I don't like it. I don't like it. Right. They don't like it. Because subconsciously, they know that it's uncomfortable, or it feels. Yeah, to have anything touching that area just feels weird or feels uncomfortable, or it's hyper.

Dr Sameena Rahman (: 33:11

Yes, yes, that was so true.

Dr Sameena Rahman (: 33:19

happening.

Jill Krapf MD (: 33:26

It's like rubbing your eye with a grain of sand in your eye, right? I mean, it's just not comfortable. And so they can't always put words to it. And then when you connect the dots for them, it's like, whoa, what? Like really? Okay, I see it now. And there are things that we can do about it. So that's what we're talking about. So as far as procedural or surgical options, and when I say surgical, it's like surgery with a lowercase s, right? I mean, these are like very minor procedures.

Dr Sameena Rahman (: 33:40

Yeah.

Dr Sameena Rahman (: 33:52

Right.

Jill Krapf MD (: 33:55

I typically do them under IV sedation just because the clitoris has 10,000 nerve endings. And it's just, it's a very sensitive area and we just don't need trauma in our lives, right? So I typically do put people to sleep, but it's almost like having a colonoscopy. I just use like, you know, a board certified anesthesiologist. I have surgery day where I do all of them and, you know, put people to sleep and it takes about, I don't know, 15 minutes or so or less.

Dr Sameena Rahman (: 34:02

Yes.

Jill Krapf MD (: 34:23

And then I do a nerve block as well just to numb the area for added pain control. But there are ways that you can use an instrument to uncover the clitoris in a very safe way, literally layer by layer. It's called a dorsal clitoral slit procedure, right? So it's documented. This is like a real thing.

And we can uncover the clitoris that way. And then as far as, and then remove obviously anything in there that's causing pain. So the indications for a procedure like this would be clitoral pain or discomfort or irritation, anything in that realm, decreased sexual function, meaning it takes longer to orgasm. I can't orgasm. It's blunted. It doesn't feel the same. It's like, you know,

trying to stimulate under a blanket. These are all the things that you hear. And then the third indication is a little bit of a softer one, but it's still valid. Some people feel really uncomfortable that their anatomy has changed so much. They want their anatomy exactly. that's a valid reason as well, because what I find, even when I do it for that indication, they usually have some sexual function benefits that they didn't even realize.

Dr Sameena Rahman (: 35:22

Because when they see it, they can't unsee it either, right?

Jill Krapf MD (: 35:37

Right? So once they heal and the healing process is fairly fast with this. Like it feels like you got kicked in the groin for like, I don't know, anywhere between two days to a week, depending on how extensive this is. But typically, and the younger you are, the faster you heal. But you know, it feels like you got kicked in the groin. So it's like ice packs, ibuprofen, someone bringing you a sandwich, right? For a little, for less than a week.

Dr Sameena Rahman (: 35:48

Next slide.

Jill Krapf MD (: 36:02

And then after that, there's, or during that time and after, there's an entire routine, a post procedural protocol that I have because I have really low re-adhesion rates, right? Because I do this procedure very often. I'm one of the probably top three in the country that has done the most of these. And so you're retracting the hood of the clitoris to keep everything sliding. There's topicals that we use to prevent re-

adhesion or from it covering back up. So there's a lot of things that we do to help with that healing process. And I have patients continue that until I see them in the office in about anywhere between four to six to eight weeks, depending on how extensive the procedure was. And then we can also do procedures for the opening of the vagina as well for the tearing and pain within our course related to scar tissue.

And people do really, really well with those procedures. called, there's a little different names for them, but a modified Fenton procedure or, you know, there's a lot of controversy on what to call it, but it's essentially removing the scar tissue at the bottom, as well as sometimes the top of the vaginal opening. And that makes a huge difference.

Dr Sameena Rahman (: 37:05

Right.

Dr Sameena Rahman (: 37:15

And then you still then when you use the topicals, it's like so much better for the healing and then the inflammation and all the things.

Jill Krapf MD (: 37:22

absolutely. And the idea here is by removing that scar tissue, you're allowing the tissue to heal from the ground up. So it just creates a lot more space in that area. And so I would say, you know, we've we've published our patient experiences with this and we're about to publish another another big group. But the patient satisfaction is about 96%. I mean, it's super high with these with these procedures. So

Dr Sameena Rahman (: 37:43

Yeah, yeah, yeah. The ones I've done have been written on too. They're so grateful because, again, once they look at their, we all show our patients their anatomy with a mirror, and once they look at it and they realize how the architecture has changed so extensively to fix it and then not fissure, not have pain, not have bleeding, it's just transformative for their sex life.

Jill Krapf MD (: 38:07

absolutely. I mean, we hear it all the time. And this procedure is tough because I think a lot of patients have a hard time wrapping their head around the clitoris and even the introitus or that vaginal opening. Like even with these procedures, they're like, I don't really understand exactly, you know, what we're doing or how we're achieving this. But the patients who go forward with it, the amount of function that they gain is actually surprising even to them. Like not to me, I know that they're gonna be more functional.

But to them, they're like, wow, I didn't even realize that this was blunting my sexual function or that, yes, they know they're tearing every time, but they didn't think that there was a possibility that they could have intercourse and enjoy it and not have tearing. so it makes, obviously patient selection and informed consent are huge.

Dr Sameena Rahman (: 38:40

Yes.

Dr Sameena Rahman (: 38:53

All

Dr Sameena Rahman (: 39:00

Yes.

Jill Krapf MD (: 39:01

parts of this, but when you have the, you an informed patient, the right patient that would benefit so well from this, really, it's a, I have had patients say this is life changing.

Dr Sameena Rahman (: 39:13

Totally, totally agree. Yeah, I agree when I've done it in my office. It's been transformative for their, not only like sex life and partner life and everything, but just really their quality of life and how they feel about themselves, right? Their esteem, self-esteem goes way up as well. So, yeah, I think it's, and it's not so complex. It's one of these things that's like, you just feel like, know, if they would have known earlier, they would have done it, or, you know, they could have prevented it too if they had been diagnosed earlier.

Jill Krapf MD (: 39:41

Exactly. I think it's really important with these conditions and with these procedures that you that patients see somebody who's very experienced and skilled. Because, yeah, sure, you know, the actual surgery is not that complex, especially if you're a surgeon like a OB-Gyn or a urologist. It's but it's it really comes down to preparation of the skin. So

Obviously somebody, need to address any atrophy or menopause, genitourinary syndrome and menopause, because if you have skin that's not well equipped to heal, you're just not gonna have good healing and you're gonna have a higher rate of re-adhesion. And then the obviously selection, like the patient, their lichen sclerosis has to be in remission. Otherwise you can have covenorization phenomenon, which means like...

Dr Sameena Rahman (: 40:23

you

Jill Krapf MD (: 40:35

any trauma to the skin in active lichens sclerosis can actually make the lichens sclerosis worse in that area. And so you can actually do more harm than good if you don't recognize these things. And then the other thing, obviously surgical technique plays a role, but then aftercare is essential. It's absolutely essential. And so it's really the before and the after that makes a huge difference. And obviously the surgical technique during as well, but

If you're going to have something like this done, it's important to go to a high volume surgeon for this.

Dr Sameena Rahman (: 41:12

Well, Jill, this has been great. I feel like I want to be cognizant of your time and I'll probably have to have you back to talk about some of other stuff. if you have to give a piece of advice to any of the listeners who have really struggled to find the right person or, you know, my tagline is here, I'm here to educate so could advocate. How would you recommend that they advocate for themselves or to find the right people that will help them?

Jill Krapf MD (: 41:37

So there's a lot of support groups that are available and directories. And all of these are relatively new. It's really been in the last five years or so. But the resources are there. There are doctors that love to see patients with lichen sclerosis. I mean, I'm one of them. These are my favorite patients. And so you can find, they're all over the country, all over the world. It's just a matter of finding them. I might just be a little bit more

out there and loud because of social media, right? But there's people like me that do exist. So, Likensklerosis Support Network is a really great nonprofit resource and they have a directory. They also have blog posts and education. LostLavia Chronicles Jackie has been a great, yeah, she's a great educational resource as well. But the directory is really wonderful because these are basically

Dr Sameena Rahman (: 42:24

Yes, I love to add around my podcast.

Jill Krapf MD (: 42:35

doctors or healthcare providers that have identified or patients have identified them as people that are interested in treating. And so that's where I would start as far as directories go. There's also directories from the ISSBD and ISWISH. So these organizations for vulva vaginal disorders, for women's sexual health.

And there's directories on there as well. Even things like pudendal neuralgia, there's a directory for that. There's really a directory for a lot of these things. It's just a matter of finding it. And I think that, you you really need to listen to, everyone has different values and fears and concerns. And I know in my practice, my intake or my initial consultation is an hour and a half because I treat the whole person, not just.

Dr Sameena Rahman (: 43:02

Yeah. Yeah.

Jill Krapf MD (: 43:28

the vulva, right? Not just the skin of the vulva or the vagina. And so, you know, we have these tools at our disposal. It's just a matter of figuring out what's going to work for a particular person. Nothing really presents exactly in the same way and everyone has different values and what they want to get out of it or symptoms or what have you. So it's a matter of figuring that out and finding the right fit for you as far as providers go.

Dr Sameena Rahman (: 43:55

Exactly.

Well, I think that's great. And I'm so glad that you were able to like just break down some of the newer treatments and some of the ways to get the care and the help that listeners need. So I appreciate you coming on and we'll have you on again to talk about some of other stuff that we love to discuss on this podcast. But my so thank you, Joe, for being on my show today, my podcast. And I can't wait to see you again. I guess I'll see you tomorrow at the board meeting for Ishwesh.

Jill Krapf MD (: 44:25

Yes, I'll see you then.

Dr Sameena Rahman (: 44:26

Anyway, my name is Dr. Smita-Ramon. I'm gyno girl. I'm here with Gyno Girl Presents Sex, Drugs, and Hormones. Remember, I'm here to educate so you can advocate for yourself. Please join me for my next episode next week. Thank you.