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18. Desquamative Inflammatory Vaginitis (DIV)with Chailee Moss, M.D.

Our Womanity Q & A with Dr. Rachel Pope

Transcript

Speaker: How many times I've had a patient who comes in to see me with a diagnosis of recurrent yeast infections and then I find a completely different condition, something that's going on with the vagina or the vulva that maybe isn't as common as yeast, but certainly isn't rare. One of those things is disquamative inflammatory vaginitis. It's not super common. It affects somewhere between 2 to 4% of women and But guess what? When you see hundreds of women in a gynecological clinic, you're going to see that pretty frequently, right? So you need to know how to diagnose it and how to manage it. I will tell you, managing it is not easy.

Speaker: The treatments are long, they're not always pleasant, and patients are frustrated. Why? Because they've been already dealing with this for so many years, essentially, right? Or you're the fifth or sixth person who is evaluating them and you're pretty sure this is a diagnosis, but it's a diagnosis of exclusion, which means we don't actually have a test that says, yes, 100%, this is what the diagnosis is. It's more that everything else has been ruled out. I feel for these women and I wish that we had more answers for them, which is why today i have Dr. Kylie Moss. She is an expert in vulvovaginal disorders, and she will be speaking to us specifically about disquamative inflammatory vaginitis or DIV.

Speaker: So Dr. Moss grew up in central Illinois and attended Wellesley College. And after she earned her graduate degree, she spent two years as a high school science teacher before deciding to attend medical school. So if you follow her online, you'll understand where that science teacher still exists. She first became interested in vulvovaginal disorders at the University of North Carolina at Chapel Hill, where she earned her medical degree. And then she engaged in research on pain and gynecological surgery during training in her residency at The Ohio State University, where she was a chief resident of education in her last year. She earned lots of awards for her research in clinical care. She's a colleague of mine that i get to see at our ISHWISH conference, our sexual health conference but every year.

Speaker: She's a wonderful person, and I'm like so excited to have her here with us today. So I'm so excited to have Dr. Kylie Moss on today because i have so many patients who have struggled and struggled and struggled. And if you are someone who has DIV or know someone who has DIV, then you know how long it takes to get a diagnosis. So Dr. Moss, let's start with just like the basics. What is disquamative inflammatory vaginitis or DIV? i think a lot of people go a long time without a diagnosis because it isn't something that's like commonly discussed in a clinical setting in training.

Speaker: Like i I remember in my first year of practice as an OBGYN, I was getting ready for my oral boards and someone was giving me a mock oral and I was asked, about a patient that was having discharge and what was my differential, right? The list of possibilities for this patient. And I didn't come up with DIV and someone said, you know, what about DIV? And I had to really do a lot of like reading to fill in my knowledge gap. So I think that that's the reason that people struggle to get a diagnosis is because it isn't talked about And I think one of the reasons it isn't talked about is because we don't know exactly what causes DIV. We know it is a combination of overactivity of the immune system, lack of hormonal support to the tissue, which usually promotes that overactivity of the immune system, and something to do with the microbiome that maybe is what sets it all off. But we really don't know exactly the cascade of events that leads to this. But what know is when people have it, they have usually green discharge. It's very irritating. They may have extra We see external vulvar irritation because of the copious irritating discharge. And under the microscope, we see parabasal cells, which mean there's not enough hormone support to the tissue.

Speaker: We see a lot of inflammatory cells, a lot of white blood cells that are sign the immune system is working in overdrive in this area. Yeah. I mean, that's what I remember from residency, right? Is that ah you have you've tested everything else, which a lot of times, you know, we do, we test for gonorrhea, chlamydia, all the sexually transmitted infections that could cause discharge, trichomonas. And then we look for bacterial vaginosis and yeast. And when all of those tests are negative and you're poor, Patient is so terrified that they might have an STI or a partner who's cheating. Right. And I've like gone through this emotional and different from normal discharge.

Speaker: Yes. Right. And it causes a lot of burning. Right. i i mean, that's what I hear my patients tell me. Yeah, yeah, absolutely. Burning, itching in the vestibule and the vulva. We do think that this is a condition that can be related to things like lichen planus because there are similarities in terms of how the inside of the vagina behaves in DIV and lichen planus, which is an autoimmune condition. That isn't to say that everyone who has DIV is going to get lichen planus, but there are overlaps in terms of the bacteria that are present and the way the immune system behaves. And some people will get treated from DIV and they'll get better.

Speaker: And then about 40% of patients, it seems like need some ongoing support, be that hormonal corticosteroid to suppress the immune system or antibiotics or sometimes all three. Okay. So let's talk about that treatment because there are times when I'm not certain that it's DIV, but everything else has been excluded. And it's called best guess that this might be DIV. Treatment is not really easy. Can you walk us through what the treatment options are?

Speaker: Yeah, so there absolutely are protocols that are just antibiotics, just topical estrogen vaginally, or just corticosteroids.

Speaker: We tend to feel like if it's sort of a three-legged stool that causes DIV, then we're going to treat all of them. And so we tend to use a combination of estradiol, which is the estrogen component, clindamycin, which is an antibiotic to kill off the bacteria that may be sort of provoking this immune response. And then a corticosteroid, hydrocortisone, which is not a strong corticosteroid, but to tamp down the immune system that low-coxy corticosteroid in kind of a high dose, 10%. Okay, tell me if this is wrong. So the way I explain to my kids, like yeah mucus, when they get colds and you know their immune system is kicking up and they get mucus in their throat or they get lots of snots, like that's white blood cells, right? like Yes. Absolutely. And unfortunately, that's what's DIV. Yeah. And in the case of DIV, it's specifically like PMNs, those kinds of white blood cells that are part of your immune response. We often see in DIV that patients will have ectropion, which the irritated appearance of the cervix. i explain the cervix as like the tunnel to the uterus. And sometimes the

Speaker: inside of the tunnel is turned out kind of like a turtleneck is bent down not to mix metaphors but i don't know how i'm gonna steal that one that's a really yeah sort of like turned down so that the inside which is protecting you from bacteria that could get into the uterus or into your abdomen through the cervix those immune cells that are on the inside are exposed and they we think contribute to some of that irritative discharge in the vagina if they're more exposed than normal and So sometimes in conjunction with our estradiol hydrocortisone clindamycin treatment, we will use a little silver nitrate to treat the ectropion on the cervix because we think that if those glands that are part of the immune response are not not as prone to irritation, that that might help as well.

Speaker: Right. That's really helpful. And sometimes that ectropion is visible and sometimes it's not there or it's not easily visible. How do you go about assessing that and... I you know i think during the first exam when I'm seeing a patient, I'm going to be pretty, especially if they're in this stage of like really intense irritation and inflammation, using a larger spectrum to fully visualize the cervix can be really challenging. So I'm not going to be a hero during that first exam. And I always tell patients, like we can stop whenever you want. We're gathering data but we to to have a lot of data from the microscope and from the history. And so sometimes we will go with that data. And then once the patient's treated a bit and they come back, they're probably better able to tolerate the exam. If I can see the cervix at that point, then I will talk about treatment. Okay. Got you. And why do people think this is yeast? ah Well, I mean, anything that causes itching and irritation and increased discharge is typically assigned a diagnosis of yeast. Patients are able to self-treat at home home with over-the-counter treatments, and so they'll often start there. But also, sometimes they're seen in practice settings that have more limited resources. A lot of OBGYNs don't have access to a microscope in their clinic. At DIV, in addition to being a diagnosis of exclusion, it's really a diagnosis that's made with the assistance of a microscope.

Speaker: And so that is something that if you don't have access to and you see a patient, common things being common with itching and discharge, and you can't get a test result right away, i think the most common thing would be to treat for a yeast infection. So patients get treated presumptively because the diagnostic tools aren't necessarily available.

Speaker: Can you break that down a little bit? Because i know there are lots of practices where people are doing a vaginal swab and sending off for vaginitis. Yes. asked But this is different from the wet prep or your microscopic slide.

Speaker: Right. I always tell patients I'm collecting two specimens. One is for the microscope for me to look at in and the clinic today. And the other one is to send to the lab for culture. But in most OBGYN practices, what's cost effective for the vast majority of people who don't have DIV is something called a PCR based test. So that test looks for DNA from an organism that can be causing irritative changes in the vagina. They're looking for yeast, Gerdnerella, which causes bacterial vaginosis, and some other like rarer strains of yeast by DNA. But they don't look for the presence of white blood cells. Those swabs are not looking for the presence of white blood cells. They're not looking for the presence of parabasal cells. That's not in the the sort of capability of that particular swab. So the most common swabs that we have for vaginitis aren't looking for DIV. And that is something that someone has to look at under the microscope.

Speaker: Which again, brings us back to why so many women go to ah clinician after clinician before getting a diagnosis, right right? So many barriers. Yeah. And I've been in practices before where they didn't allow us to have a microscope because of the regulations of having like the the specimens around. And, you know, there are a lot of regulations. and Absolutely. Yeah.

Speaker: Yes. Yeah. Yeah. else Yeah. Certification. And so if you're not, if you don't have that certificate, then you can't do the lab tests in your office. Yeah. Another thing I think is difficult. I have had patients with DIV where every time I examine them, it looks like freaking yeast.

Speaker: like i Like, feel like this has to be yeast. It's got to be yeast. Well, they're not mutually exclusive, right? right And the thing is, if you're treating someone with estrogen, which has in some studies been shown to promote some yeast growth, hydrocortisone, which suppresses the immune system response to yeast, and clindamycin, which destroys good bacteria,

Speaker: for some folks, then I call it a yeast bomb, right? Like basically three different ways. This is what started this conversation. What did you mean about a yeast bomb? Yeah, it's like three different ways to promote yeast growth in one treatment. And people need if they have DIV. But that's why usually will start by treating patients daily with just a gram. I'm not telling them to do like a five gram applicator like you would think of your traditional like terco treatment or Metro gel treatment, which is usually like more like five CCs. This one gram. It's about a chickpea size on their finger inserted into the vagina every day for a month. It's a small amount of those three ingredients, but every day for a month, I usually do have patients start out, especially if they've had a recent culture positive yeast infection with fluconazole suppression. Once a week of a tablet of fluconazole, just to try to keep the yeast at bay. while they're using the treatment so frequently. And then when they start to step down, then I will taper off the fluconazole.

Speaker: That makes sense. I like that. That's really great. and you know how long do you keep people on the combination of clindamycin and hydrocortisone and estrogen? Absolutely. This is where follow-up is so important because we know so many people with DIV will need some sort of ongoing treatment, right? There's a reason this started in the first place. We don't really know what that reason was, but it's an indication that, you know, they need more hormone support in their life and they may need more suppression of their immune system. And so usually what I do is I see them back in two to three months. If they're feeling a lot better, I'll try to get that clindamycin out of the topical that they're using because I don't want to promote antibiotic resistance. And then I'll see them back in three to four months and see how they're doing. If they're doing really well that point on just estrogen and hydrocortisone, and I'll say, all right, like maybe we can take the hydrocortisone out and see how you do on estrogen alone.

Speaker: Again, trying to limit things like yeast. You know, maybe if they're on estrogen and hydrocortisone and they're just using it like twice a week and doing really well, leave it for six months. If they're still doing fine, think about taking the hydrocortisone out and and sort of gradually tapering down the therapy. But I usually will keep those folks on some kind of estrogen, even if it's just a small amount twice a week, because I do find there's just a high risk of recurrence. Even for your premenopausal patients or yeah, can we talk about that? Because I feel like I see, and and I don't know if this is true, but just subjectively thinking about my patients with DIV, I think they're mostly premenopausal. only have a couple that are postmenopausal. and i think it's because the immune system is more robust when we're younger, right? But I still do see a fair number of postmenopausal patients. And maybe that's just like my practice makeup. I always tell people like you...

Speaker: always have in general, usually the trajectory is that you have less estrogen today than you did yesterday. And so even if you are doing fine from a DIV standpoint, that estrogen continues to wane with time. And so giving you a small amount of very low risk support vaginally, i think is much better than having a recurrence of DIV, which can be so uncomfortable and really like life limiting. That's a really good way to think of it. I like that a lot.

Speaker: If someone is listening and they're wondering, God, I get a lot of discharge or me I get itching and irritation. How do they have the suspicion to that they actually have DIV or they need to be re-examined or re-evaluated for DIV?

Speaker: My like DIV antenna go up when I hear a story of numerous treatments for yeast or BV, rarely culturing positive, right? So they've been tested a lot and they're not getting positive results and they're not getting better with antifungal treatments or with metronidazole, like treatment for bacterial vaginosis. And they're continuing to have really, you know, often that is like a green or really um thick discharge. It's very irritating.

Speaker: Okay, that's really helpful. And I'm sure it affects people's sex lives too. Is there something that people should be aware of? Like while they're on treatment, are they supposed to abstain from intimacy? There are not good guidelines for that and not good data for that. And so I generally say like, if you feel comfortable, if you're feeling better, it's totally okay to have intercourse. This isn't a sexually transmitted infection where going to affect your partner to the extent of our knowledge, right? We have new recent data about bacterial vaginosis and the fact that this is related to the microbiome. It's possible in 10 years, we would have more data on how the partner can be sort of changing the microbiome and contributing that. But right now i would say the data is it's okay to engage in intercourse if you're comfortable. Yeah. Okay. So another thing that you're an expert in besides vulvar care and and vaginal disorders is the paper that you wrote, was it last year that came out about medical gaslighting?

Speaker: Yeah. I would love to just talk to you a little bit about that because I think it's such an important topic. And so many times, I mean, I'll just even speak for myself when I would look at a list of, especially in residency at the peak of burnout, know, like seeing a list of my patients in clinic and I'd see like vaginal discharge as the reason someone was coming in most of the time again I'm trying to speak for myself I'd be like oh vaginal discharge it's huge cultural thing I mean it's because you don't have the time the like fund of knowledge because it's understudied right to really address these concerns right if Patients were coming in and we had channeled test where we could take a swab, put it on the test and know, okay, you have DAV, you have yeast, you have hormonally mediated vestibulodynia, you have, that purple line. You mean make it easy? Make it easy. Yes. We need an easy button and we don't have that. because research has been underfunded in these areas. And so I think the way I've sort of explained it is that, you know, nobody gets into medicine wanting to dismiss patients. But when you don't have the time, because you're in a system that affords you 15 minutes for a return patient visit, when patients haven't gotten better, and you don't have a lot of training, because there isn't the research to support like what you should do in a given situation, then it becomes sometimes easier to say, don't think this is a big deal than it is to spend the time to research what's going on and address it for the patient to the best of your ability and experience.

Speaker: And so I don't want to apologize for medicine because we should do better. We should be yeah we should um like maintain our intellectual curiosity. But I think there are components of lack of research and burnout that really contribute to dismissal.

Speaker: But when you're on the patient side of things, and there's this substantial power imbalance, it's devastating. Right. Totally. Yeah. And I think you're 100% right. At this point of my career, my practice is set up so differently. i don't have that same heart sink. It's the comparison of like the time, the experience, the knowledge, and then yeah, getting out of that burnout. situation of residency. But I do hear from my patients that they're still having the same sort of experiences with each one of their clinicians that they've seen beforehand of, oh, it's just yeast, or we're going to do this or treat this or really having those terrifying conversations where they are convinced that their partner is cheating on them. I'm like, but nothing has come back positive.

Speaker: Right. So many patients that get told, well, maybe this is herpes because we just don't know. And then they're like, oh, no, I've had this partner forever. I've never been exposed to anyone else. they And they haven't either. And so then obviously, if this is a sexually transmitted infection, what does that mean? I think it's just we have so far to go in terms of system reforms and fund of knowledge to make this better. Yeah. And just listening to women, right? Like that's the most important thing. Yes.

Speaker: Yeah. Unfortunately, like you mentioned, with the power dynamic, it can be really hard for a women to advocate for themselves. And Maybe discharge doesn't, it's not it's not like a cancer where you're dying or something, but it's it's disruptive to a person's daily life. And i always say, you know, we know that like in psych, there are antidepressants that have sexual side effects. And it was like, oh well, it's a sexual side effect. No big deal. But then people who have really serious side conditions will stop these medicines because of their sexual side effects, right? And so we really, these things have been dismissed as part of medicine that is not life-threatening. But in fact, um the impact on quality of life, the impact on mental health, they're really substantial. And so it's just, it merits more of our collective attention and resources.

Speaker: Yeah. Okay. So Dr. Moss, if you were going change things and make things better for the next generation of gynecologists, what do you want them to be learning in the residency or in medical school? Well, I want two things. One is I want them to have more time, both in training and with patients. I want them to have time. I think 15 minute visits are unacceptable to anyone. And so I think that's the biggest thing because in training, if you have the time to sit and listen to a patient and talk with your attending about it, I think a lot of this knowledge can be transmitted more easily. Yeah. And then I think I want trainees to have more time looking at a microscope and being quizzed on what they're seeing. And I want them to have more time just spending time with patients with pain conditions so that they can see, okay, I can develop my own algorithm in my mind. And there are approaches to these that are not so daunting, right? Approaches to these problems that are not so daunting. Yeah. And can you explain to us like what you do now? Because you have left to academics because have wasn't working, right and It wasn't working for me, I think. And I also just...

Speaker: Was a patient, you know, of a practice like this. And so when an opportunity arose to really like jump into this space, it really spoke to me. And especially because I felt like within the context of working with Jill Kraft and Andrew Goldstein, I could have the expertise I needed to not have that deflated feeling when seeing patients that have these issues. And I have the time, right? So we have an hour to an hour and a half with our new patients. That means we can spend 15 to 20 minutes just talking about what have you tried? How did this start for you? And give me all of your medical history so I have a really good context to make decisions about your care once I have the exam. And then I can spend 15, 20 minutes in the exam room, really doing a thorough exam from a skin standpoint, from a muscle standpoint, from a nerve standpoint that I think help inform the diagnosis and treatment. And then I can spend 15 to 20 minutes talking about what the plan is going to be. And I actually think that's the most important thing, because if I can draw patients a picture and write out a plan that they watch me write and then bring out of the office in my own handwriting, not some like pre filled computer printout. It's customized to them. And it makes a big difference. That's so great. Yeah. I mean, I've interviewed you, Dr. Kraft and Dr. Goldstein multiple times. I love all of you guys. You're all so smart. You're doing amazing work out there. and It's just, I know that that you guys are also always training people and teaching. I'm very involved in our societies that are teaching and getting information out to people. Yeah, especially because we feel like, you know, not everyone can afford to come and see us. So anything we can do to make more educational resources available outside of our practice, we want to do. We're going to be a site for GW learners. We're all adjunct there and we're to have rotators from medical students and residents, which i think is great. but also, you know, involvement in the pain course through IshWish and just trying to get the word out about how to think about these problems and and diagnose treat. That's awesome. Okay. Last thing, if anybody is looking to come see you for help or wants to follow you for more information, where should they, where should they be looking?

Speaker: Yes. So Dr. Kylie Moss and Kylie is C-H-A-I-L-E-E-M-O-S-S on Instagram. I'm on Reddit and also on YouTube. But our website, I think, is the easiest way to like get started if you're interested in appointment, vulvodynia.com.

Speaker: And I will just put in a plug because we have some ongoing research studies. I think Jill had talked to you about this a little bit, but we have research studies ongoing for lichen sclerosis using a non-steroid medicine and ketodafin, which is a medicine that is anti-inflammatory for pain conditions of the vulva. And then we also have other studies going on for people who have really tense muscles from pain conditions of the vulva. So... Lots of ongoing research that I think if you're interested in participating in is also on the website, vulvodynia.com. That's awesome. Wonderful. Well, thank you so much. I really appreciate your time and thanks for your expertise. Thank you so much for having me.

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