Episode Transcript
Jill Brook: [00:00:00] Hello mast cell patients and wonderful people who care about mast cell patients. I'm Jill Brook, and this is Mast Cell Matters Deep Dives on Mast Cell Activation Syndrome or MCAS with Dr. Tania Dempsey, who is our expert today. She is our amazing guest host, a world renowned expert on MCAS and related conditions. A Johns Hopkins trained physician and researcher. And she's amazing, as you probably know if you listen to this podcast. So Dr. Dempsey, thank you for being here today to talk about mast cell symptoms and treatments for when people have symptoms in their nether regions. And if there's time, perhaps we can also ask you some listener questions from our last few episodes about hormones and sexual health.
Dr. Tania Dempsey: Yes, let's do it.
Jill Brook: Okay, perfect. And I think we're just gonna say we're gonna have a disclaimer that we're gonna be speaking about some unconventional ways to use some mast cell [00:01:00] therapies. And we're not recommending that anyone try this at home. This is not medical advice, just general information. And everyone should consult their physician about what's right for them. But Dr. Dempsey, in 2019, you and some of your colleagues published a paper in the Journal of Obstetrics and Gynecology. It was called Successful Mast Cell Targeted Treatment of Chronic Dyspareunia, Vaginitis and Dysfunctional Uterine Bleeding.
And your colleagues that you published that with were Dr.
Lawrence Afrin, Dr. Lila Rosenthal, Dr. Shanda Dorf. And tell us about this. Maybe, maybe for starters, maybe you can just make sure everybody knows what those three things are, the dyspareunia, vaginitis, and uterine bleeding.
Dr. Tania Dempsey: So dyspareunia is pain with intercourse. Well that's, that's the term that, [00:02:00] that the medical term that, that came up. But dyspareunia could be other things. In general that there's, there's pain, but certainly if something's inserted it's more painful. Vaginitis is, you know, sort of inflammation in the vagina.
Sometimes we also call it vulva vaginitis 'cause the vulva can sometimes be involved and itis is, is inflammation, but it can be caused by lots of different things. There are, there are vulva vaginitis or vaginitis that, that are, is caused by infection. It could be yeast, could be bacteria. In this case we were concentrating on mast cell driven
inflammation. And dysfunctional uterine bleeding is really where you're bleeding, but not on a, on a cycle, a menstrual cycle. So it's happening in between the cycles. In the case that we presented in that paper, it was basically the woman was bleeding all month long, every month, [00:03:00] months and months on end.
So those are the, the conditions that we looked at. And what we did for the paper was really, we, we combined some cases and our experience with the cases and we looked at mast cell targeted therapies to address these different conditions. In some cases we used oral antihistamines. One of the cases, actually, it was my case that was that I submitted, was the woman with dysfunctional uterine bleeding who had been bleeding month after month, day after day.
And oral loratadine, Claritin, was I think what what got her out of it. I think it was Claritin and Pepcid, if I remember correctly. But it was a very, right, it was like the simplest intervention and it just changed her life.
Jill Brook: And I bet she saw some other doctors before you who...
Dr. Tania Dempsey: Who did a lot of other things that did not work. And she, she had, she had a complicated history and she had [00:04:00] polycystic ovarian syndrome. She had a history of Cushing's, she had a lot of things that could definitely have been contributing, but clearly the mast cells were really kind of the, that, that top layer that was really driving that condition.
So we used, you know, oral. But the other, some of the other cases we used topical. So there were cases where we used antihistamines or other mast stabilizers that were inserted into the vagina. One case was using a like a douching preparation where the patient had, you know, used a douche bottle, emptied what was there and put in diphenhydramine I think was one of the cases.
You can compound diphenhydramine into a suppository and insert it that way. There are different ways that you could put mast cell stabilizers in the area that might help with some that, that I think was for, that [00:05:00] may have been for the vaginitis. Yeah, so I apologize, I don't re remember exactly every case.
But, but generally, you know, the point is that there are, especially if patients are not responding to the conventional ways to treat these things. There are patients, let's say, who have a vulva vaginitis who are given various, topical or oral antibiotics, antifungals, they've done all these things and the inflammation is there and they're miserable.
This is where it's so worth, you know, maybe trying something either topically in that area or orally to see if we can bring down the inflammation. So that, that's the point. Whether you have an inflammatory condition, it's worth thinking about whether the mast cells could be involved in that. So that was the paper.
I will tell you that since we published the paper, I've definitely had much more experience and have tried more things. And I [00:06:00] think that there's a condition we didn't discuss in that paper that I think is really super interesting. Which is called neuroproliferative vestibulody nia. And so dynia means pain.
Vestibule is an area that is a, it's a, it's a circular area around the urethra where the urine comes out, there's like, there's an area in there, we call it the vestibule. And neuroproliferative means that there are lots of nerves that are growing in that area and causing pain. And there's research that has shown that, and I actually have collaborated with a number of urologists and gynecologists and we have a paper that we're publishing on this condition because, and looking at different ways of treating this condition, what they, what they have found is when they stained tissue [00:07:00] that was removed in that area near right near the nerves that they were seeing that were proliferating, they saw an increased number of mast cells.
Jill Brook: Oh.
Dr. Tania Dempsey: And so the teaching or the thinking is that the mast cells are releasing their mediators, causing the nerves to grow, 'cause we know that mast cells can do that. It can make things grow abnormally and that's causing pain. And this is a condition that has been linked to, to, for some women, either there's a, a congenital process,
some women are actually born at, you know, very early or they develop it very early in life, maybe exposure to diapers, maybe diaper cream. Some, some women after they've used antifungal, topical like Monistat, there are different things that could potentially cause this condition. And you and I know that all those things could trigger a mast cell reaction [00:08:00] that then may cause this neuroproliferative condition.
So what we're looking at is, are there mast cell stabilizers that could help women with this condition, because the only treatment that is known to help this condition is surgery. They remove that tissue. That to me seems very radical. So if we could find something that works. So there's a group and I believe they're in Israel, that it had done a, a preliminary study using ketotifen topically on that area to see if they could potentially help
reduce either the mast cell number or reduce the pain from the condition. So what we're looking at is we're trying to identify, or we, we've done this already, we've identified a few compounds that [00:09:00] we would like to study at greater length and look for funding for, for this condition. Ketotifen is on the list, luteolin is on the list.
And then there are a number of other things that, that people wanna look at. SPMs or specialized pro-resolving mediators, which is a compound that's derived from fish oil. These are really interesting compounds that have been shown to help with the inflammatory process and stopping the inflammation.
So there are a number of different compounds that we're looking at or that we've decided need to be studied. We don't know if they're all gonna work but I think that, that, this is something that I've learned about since that paper. And, I'm excited to be collaborating with colleagues in different specialties just to see whether we can get some more answers.
Jill Brook: Yeah, that's amazing, and it's also just interesting to think that some of these, either mast cell stabilizers or antihistamines, that they [00:10:00] basically will stabilize whatever they touch. Like ketotifen, they put that in the eyes sometimes, right?
Dr. Tania Dempsey: Yeah. They're eye drops. People use for, you know, allergy season or pollen or whatever. So that's where you, that's kind of like the, the, the thinking is if you could put it topically on the eye and it's gonna have an effect on the mast cells in the eye, well maybe there's other tissue that, you know, it may actually also work on.
Jill Brook: Yeah. And I, I know just from, from hearing some of your colleagues speak that some of them have sometimes experimented when somebody's really desperate, they try, I mean, I jokingly laugh because sometimes it's like, in desperation you squirt the mast cells stabilizer where the mast cells are going off, and it sounds like, you know, you would only wanna do it with a doctor's supervision, but sometimes, sometimes you hear about it helping,
huh.
Dr. Tania Dempsey: Yeah. Yeah. So, you know, look, when when again, conventional treatments don't work and people are [00:11:00] suffering, you've gotta think outside the box. You know, there, there, we have so many, you know, I, I'm an optimist. I try to be, right. I wanna give people hope. We have so many things right at our fingertips that can be repurposed.
We don't always think about it that way. If something is working for something else, maybe it will also work for this other thing and, but maybe it's never been tried for that, so you wouldn't know if it would help. So I like to think that, not that we should all be experimenting all the time, but I think that if you have, some of us can start to think this way and provide patients with some options,
right? I think that's huge.
Jill Brook: So I'm guessing there's some practitioners listening right now and they're wondering, what makes you think that someone's a good candidate to try this? Like what makes you think that this symptom is part of Mast Cell Activation Syndrome and kind of who are good candidates for trying some of this stuff?
Dr. Tania Dempsey: Well, right, [00:12:00] so, so I just talked about this condition. It's a very specialized condition called, again, neuroproliferative vestibulodynia, but, so that, I mean, I, I don't have a, a lot of patients with that, right? It's a small number that, because my practice is not, you know, the people who are seeing it are people who are experts in, you know, they're either sexual health, you know, related urologists or gynecologists.
So I don't see a lot of that, but, but I, but I will see patients who have more general discomfort, pain things that affect them, you know, whether it's, you know, they feel pain with intercourse or they have again, they're have abnormal bleeding or they you know, whatever it is we'll call it down there, right?
Anything in the in, in the vulva vaginal area, right? We're talking about women first, but you can sort of generalize to men a little bit, but differently, [00:13:00] you know? So I think that if you have a condition that you know is inflammatory that no one really has been able to treat with, again, more conventional avenues then you talk to, you know, your doctor.
So for me it's like, what makes me think they have that? I think that what I typically would say is that if they have other features of Mast Cell Activation Syndrome, then not that I'm gonna make an assumption that this is a mast cell problem, but I will consider it, right. I think it would be rare to have a patient who only has a mast cell problem in one part of their body.
So actually they looked at this with patients with neuroproliferative vestibulodynia, and there was a paper that was published that where they were able to do some kind of questionnaire with patients to see if these patients also had other mast cell type symptoms and I forgot the exact number, but, but a, but a decent sized number of these patients [00:14:00] had multisystem inflammatory symptoms that suggested an underlying mast cell disorder.
There were some patients who did not though. They only had this condition with, with mast cell, increased mast cells only in the vestibule only, only, that area. So, so those patients probably don't have Mast Cell Activation Syndrome, but there is something about the mast cells in that area that have been primed to do, to do what you know, what it's doing.
And so regardless if it's a systemic mast cell problem or a localized mast cell problem, mast cell targeted therapy makes sense. You know?
Jill Brook: Oh my goodness. Especially if surgery is on the table for some of these things.
Yeah. Wow.
That's amazing. Okay. Is there anything more to say about that paper, or should I move on to the next similar topic?
Dr. Tania Dempsey: Yeah, so not, not much else to talk about with that paper, but I would say that, you know, we're talking about [00:15:00] mast cell stabilizers and, and treatments like that, but we, we will need to also talk about the use of topical hormone therapy for some of these conditions.
Jill Brook: Yeah. Should we do that now?
Dr. Tania Dempsey: Yeah, because I wanna bring up that for a lot, for some patients who are in the perimenopause, like we didn't cover this in that paper, but, but I think this is important and maybe warrants another paper, patients who you know, mostly I would say it's perimenopausal. Perimenopause can start, you know, in the, in a, like a woman in their thirties even, late thirties or mid thirties, so perimenopausal period, there can be fluctuations in,
estrogen, progesterone. And sometimes there is a significant amount of vaginal discomfort from there can be dryness. There can be some atrophy of the tissue in that area. And those are patients [00:16:00] that should be treated with topical, especially if, if it's determined that it's, it's a hormonal problem and somebody's actually looked at that area, I would say, you know, topical estrogen inserted either estrogen inserted or,
or locally around the area can be very helpful and can stabilize the tissue and help the tissue be more, more resilient. Sometimes they even use topical DHEA, which is a precursor for testosterone, but it does have some good effects on the, the, the vaginal like mucosa and, and can help.
Sometimes it's combined with, with estrogen. So I, I don't want people to think that it's only like we're only putting like Benadryl in that area. We are, we are thinking about, right, other things that could be driving symptoms. And, and for perimenopausal or menopausal women who [00:17:00] like, they can't have sexual relations.
They like even sometimes in, in clothing, in just, you know, wearing pants, you know, they're, they have discomfort. Maybe their underwear's rubbing, maybe, you know, there are lots of, lots of things that women experience that we need to take seriously and, and treat appropriately. So sometimes sure, the mast cell stuff makes sense.
Sometimes the hormone stuff makes sense. Sure, the hormones and the mast cells are related, but I, but I think that a lot of women are not treated, I don't wanna use the term aggressively enough, but like, but yeah, they're not, you know, treated with hormones as much as they probably should be.
Jill Brook: And the sense I'm getting is that hormones are really complex. I mean,
I know, I know at one point we had talked with Dr. Anna Cabeca
about hormones, and I know that you and I talked a bit about hormones and at first I sort of got it in my head, okay, I get it, [00:18:00] so, progesterone is kind of a mast cell stabilizer and estrogen is kind of a mast cell trigger, but it's not that simple, is it?
There's like
so much more to it and all these other hormones. And you guys had mentioned oxytocin. We had a question come in if you could talk
more about that.
Dr. Tania Dempsey: Yeah, yeah. So, right, so this is the thing, right? When you look at studies done on, on rats and mice, that's when you can say, okay, it showed that estrogen may be activating mast cells and progesterone as a mast cell stabilizer, but we're not rats or mice, right? So I think about this, about, you know, there's a dichotomy always in, in our bodies.
I feel like sometimes some things do one thing, but then they can do something else. So, steady state estrogen may actually be stabilizing for mast cells. It's the swings in the estrogen that may not be, may be activating for mast cells. So that if we look at [00:19:00] it from a perspective of you put a, a woman on a hormone replacement therapy where they're getting steady state estrogen, you know, sort of on a daily basis, whatever, whatever form they're getting it in, right,
but it's like this, they're, they actually may feel the best they've ever felt. Their mast cells may be actually fine with that. But, but when they are perimenopausal and they can go from estrogen levels of zero to 300 overnight, that's when that can really kick up their mast cells. So I think that, I think it depends on the dose, the, the concentration, the, the change, right?
I always think about mast cells as registering change more than anything, right? So it's the change in the barometric pressure, it's the change in the weather, it's the change, right, those small changes, small or large that seem to be the biggest triggers for mast cells. So I think when I think about estrogen, I, I guess what I [00:20:00] question, is it, is it estrogen itself
that's the mast cell trigger? Or is it the changes in estrogen levels?
Jill Brook: Ah, very wise. I'm so glad you think about this at a level higher than...
Dr. Tania Dempsey: I think about this all the time. All the time. Well, because, because, you know, that's how I am, right? So I see patients. I try to understand why one patient reacts one way, a patient reacts another way. I definitely have patients who are very sensitive to hormones and really, it really takes a lot of work to figure out, you know, how to get them not to react to the estrogen for other patients.
So I do think a lot about it because that's where I live, in that nuanced gray zone. You know, great for, for doctors who wanna like live in that black and white, like everything is either this or that. I, I've never done that. I can't do that because that's not, [00:21:00] you know, what I'm, what I'm treating.
So I do think a lot about, okay, what are, why is this happening? Why, why are there so many differences between people? And I think that that's what it is. I think it comes down to how their mast cells perceive change,
you know?
Jill Brook: That makes a lot of sense. And so we oftentimes just think only about a couple of hormones being the main one. You and Dr. Cabeca had mentioned briefly oxytocin.
What is that and what do we know about it?
Dr. Tania Dempsey: So oxytocin is a super interesting compound, hormone. It's a, it's a hormone and actually it's a neurotransmitter. And it's the hormone that helps with attachment when a, when a a, a woman has a baby. That sort of like the delivery, the lactation, breastfeeding, all those types of things.
Oxytocin is made in the hypothalamus. It's released from the [00:22:00] pituitary, and it's released when there's like, it's like a feelgood hormone. So it's released when there's bonding, there's touch. So when the baby's breastfeeding, oxytocin is released.
And that helps with, that, helps with the bonding. That helps with, some people call it the love, the love hormone. But it can be released when you're hanging out with, with friends and you're having a good time. It can be released, you know, when you're doing things that are about you and pleasure and laughing and those types of things,
oxytocin seems to be released for some people. Some people maybe don't have enough oxytocin, and so you could actually take oxytocin. They have different delivery methods. You know, there, there are ways to sort of like trochees. So like there may be couples who are having trouble bonding, right?
So what happens is when a, when a, when, when a couple is [00:23:00] trying to, you know, let's say get closer or let's say it's a married couple and they maybe they're not having you know, sex regularly or whatever, they're having trouble, you know, sometimes you can use oxytocin to see if that could help,
like the feel good hormones be released and help with the bonding and help, help with, it's not a, it's not a hormone that increases libido necessarily, but it helps with that connection. So it's a really, really important hormone and, and it's a neurotransmitter, so it does a lot of things and probably interacts with other neurotransmitters.
So you think about the nervous system, you think about it as like an endorphin, kind of.
Jill Brook: Oh, that's so interesting. Okay. And then we also had people asking, does testosterone have anything to do with mast cells?
Dr. Tania Dempsey: Yeah.
Yeah. So, so we should definitely talk about testosterone 'cause it's really interesting. Testosterone [00:24:00] may have some mast cell stabilizing properties. I say may 'cause it's also complicated. There are receptors on the mast cell surface. There are, there are over 300 receptors that mast cells can, can make and over 1200 mediators that mast cells can make, right.
And the receptors are how the mast cells read the environment. So there's something in the environment that binds to the receptor. It sends a signal to the mast cell. Okay, you know, degranulate and release your, your chemicals. So, so, so, estrogen, progesterone, testosterone, all have receptors on the, on the mast cell surface.
In some studies done in rats, testosterone was shown to have some anti-inflammatory effects. In that it, and it stabilized the mast cells. I think there's some truth to that in humans too. We know, at least in men, [00:25:00] we know that testosterone, when testosterone levels go down, right, men feel weaker,
they, they, their libido goes down, their muscle mask goes down, their bone health suffers, their mood suffers. I mean, the list is, is extensive. We know when you replace that, you know, they, they feel better. So beyond what it's doing for the mast cell, there is some, you know, testosterone's super important. For women,
one of the most misunderstood things is that if you compare the amount of estrogen to the amount of testosterone that women have, actually women have more testosterone than estrogen too. But the, but the, the units that estrogen is, is reported as, and the units that testosterone's reported as are different.
So it seems that women have less testosterone, but they actually don't, they actually have a decent amount of testosterone, and, and so I think that's important because when testosterone goes [00:26:00] down, also in women, they, they have the same, a lot of the same symptoms. Their mood goes down, they don't have energy,
their libido goes down, the sexual function suffers, the muscles, you know, are not, are not responding. Even if they exercise, they may not be able to build muscle. So there are a lot of things that happen when, when testosterone goes down. And so, treating women with testosterone, I think is important.
Where I think the, where I see kind of the nuance of testosterone is this, that, so, okay, so let me, let me go back a little bit. There are two points I wanna make. One is that, for some women who are not ready for estrogen or progesterone, they may be younger or maybe they're ready for progesterone, but they're still cycling, they're having normal cycles, so that means that they have plenty of estrogen.
Testosterone's one of those hormones you can actually use sooner [00:27:00] than, than estrogen. So that's nice. Okay, so, so there are women who are cycling, but their testosterone is low. So you can use testosterone much sooner than you can progesterone. So for, for women if you can use progesterone and testosterone earlier, right, you may be able to provide some stabilization to the mast cell, which is what I see, right?
That, that I know progesterone for a lot of women, right, it helps with sleep, it helps relax. Maybe it's reducing the amount of histamine and that's why people are able to sleep better. So I think testosterone, while it's doing different, has a different function, is also having some stabilization effect, which I think women really, really appreciate and feel good with.
The issue though is that there is a subset of women who naturally have much higher levels of testosterone than their cohorts, you know, or [00:28:00] just, you know, similar groups. And that's a group of women who have polycystic ovarian syndrome. Their testosterone is higher and causing issues like hair loss,
hair growth, they tend to have hair on their face, like mustache area, on their stomach. They might have acne, they may have trouble losing weight. They don't need all those things. They can have one or none or none. They can have fertility issues. Those women are very, very sensitive to testosterone.
And testosterone does seem in those women to promote more insulin resistance. And so I'm just a little more careful with women who, for all their life they, they were sensitive to testosterone. Some of them, when their, when their testosterone starts to fall in [00:29:00] perimenopause and menopause, they feel awful.
And so because they're so used to such high levels of testosterone, you've gotta give it back. But I have other patients where that high testosterone was actually not good for them. They didn't feel good, and as their testosterone goes down, they actually feel a little bit better. So I always have to just sort of know my audience and understand the patient.
And so there's a small subset of patients that I think don't do well with testosterone. Women that are, that their receptors are so primed that they're almost like too sensitive to the testosterone. And in those cases, I think they become a little activating to the mast cell.
Jill Brook: Okay.
Dr. Tania Dempsey: So everything, so it's, it's sort of like this, let me, let me make an analogy.
Cromolyn. Cromolyn, right, we know is a mast cell stabilizer, right? But I have patients where it activates their mast cell, right? [00:30:00] It doesn't work. It makes 'em feel worse no matter how slow we titrate, no matter how many different preparations of Cromolyn we've tried for whatever reason that Cromolyn is activating for them.
But yet there are lots of patients where Cromolyn is a miracle drug. I kind of think the same thing with these, with hormones. For everything that's gonna be amazing and helpful and stabilizing, there's also going to be, for some people, the opposite effect, and you really need to think about that on a personalized level with each patient.
Jill Brook: Wow, that's so interesting. So I don't normally like to share my own experiences that much on here because I know we're all so different. But I did have one experience
that I kind of wanted to share. Well, first of all, you helped me with it so much, but I imagine there's possibly other people out there that I wanna warn them.
Dr. Tania Dempsey: Please do.
Jill Brook: Yeah. And that was that, you know, so, I'm in my early fifties and I was [00:31:00] having hot flashes at night, but I was having no other different symptoms, nothing related to the stuff you were talking about. Nothing that you
would classically talk about with hormones or estrogen or things like that. I was having hot flashes and of course in the grand scheme of things, when you have a lot going on, I was like, big deal, big whoop, who cares? Except that then every day around 10:00 AM I would have a worsening mast cell flare, and they were getting, you know, more severe and more scary and kind of going systemic with what I feared was the anaphylactoid type symptoms. And of course I did the first thing you do, which is figure out, okay, what's the new trigger? What have I done? Is there some mold I didn't see? Am I eating something different? And it got to where I was just too scared to eat and I was still having them, so that made me realize, okay, I guess it's not something I'm eating. And I finally figured out that the more hot flashes I had had the night [00:32:00] before, the more severe the reaction was that I was having around 10:00 AM, and I had mentioned it to you 'cause I was so desperate. My doctor didn't know what to do and nobody knew what to do. And I don't know if you remember what you said.
Dr. Tania Dempsey: No, kind of, remind me what I said.
Jill Brook: You had said that maybe I was having estrogen surges causing the hot flashes and that maybe I should try a little progesterone to offset them. And of course my local doctor did not understand the concept of any of that being related to mast cells and said, if you can find someone to prescribe it, go ahead and do it. So when I did finally find someone, it helped within hours and it was amazing. And it really brought me back from the brink of what felt like the scariest mast cell reactions I'd ever had, that I never figured out what was causing them other than maybe that[00:33:00]
estrogen surge.
Dr. Tania Dempsey: Yeah. Yeah. Wow.
Jill Brook: But for anybody else out there...
Dr. Tania Dempsey: But it goes to show you like how powerful these hormones can be, and how changes in the hormones can be, you know, so disruptive. And again, yeah, your symptoms were a little weird, right? A little unusual. Not, not totally what you would expect, but look how potent progesterone was for you as a mast cell stabilizer.
Jill Brook: Yeah, that was amazing. I wish I had found it before, 'cause I'm one of those people too, that it did help with relaxation and sleep and so it's like the first drug ever that only had nice, happy side effects.
Dr. Tania Dempsey: Good for you.
Jill Brook: Okay, so then there's a part two to that story that also I thought we should share with people.
So in order to get progesterone, I had to go get a cancer screening for breast cancer. And so, because I have pretty severe Mast Cell Activation Syndrome, and pressure, what do they call [00:34:00] it, delayed pressure urticaria slash angioedema, it was decided that instead of getting a mammogram, I should get an ultrasound. And so I did, and I had brought my own gel because I had heard some of you and your colleagues discussing how sometimes ultrasound gel can have ingredients in it that triggers, so I had tested my own aloe vera gel, a hundred percent organic, and it was fine. I brought that. And for some reason kind of during the ultrasound, I got kind of my typical mast cell feeling of, oh, my face is hot, my face is kind of burning. I can kind of feel my, my blood pool a little bit. And then, you know, the rest of the day was kind of like typical mast cell flare stuff, the ear ringing and the itching and stuff. But the weird symptom that I had never had before was weird red streaks, where the, where they had run the ultrasound. [00:35:00] And it was not a rash, but it was like underneath the skin, kind of red streaks.
And I had mentioned it to you and you said that was not the first time you've heard of a reaction to ultrasound or ultrasound gel. Do you wanna talk about that?
Dr. Tania Dempsey: Yeah. So now I'm thinking about it a little, even more than when, than we, when we first, when I first heard about this. So, when they do the ultrasound, they, they have a wand that they use, right, that they're, that they're that rubbing on your, your breasts essentially, right? That's made of plastic. Some kind of plastic.
There may be silicone, there may be something else. Sometimes they put a cover on it and sometimes they don't. Do you know if it was, if they had a cover on it or they probably didn't. They probably didn't, but they they have to [00:36:00] clean it with a one of those disinfecting wipes in between patients, I'm pretty sure.
So I was thinking that it could be the cleaning thing. Now they're putting that wand on you. It could be. Now they used your gel, right? So presumably you weren't reacting to the gel. I've definitely seen people react to those gels and they have like propylene glycol. There's a bunch of different like ingredients in there that, that we know PEG and some other things that I think people react to.
But I think also the act of rubbing in that area, because you have pressure urticaria, I think that probably it was like maybe a combination of things. Something on that wand, maybe the plastic itself or whatever, that even though the aloe is covering, it's still, you know, you can't avoid contamination that way.
But I think [00:37:00] it's that the, the, because they're going down, right, they're going down, then they're moving around. So my guess is those, those streaks were from where the wand pressed on your mast cells and cause them to explode.
Jill Brook: And then
I also have the vibration trigger already known, and so...
Dr. Tania Dempsey: Oh. Yeah, possible. Yeah. Yeah. So you didn't react to the gel, right, so that was like the good thing, I guess. I can only imagine how bad it would've been. It would've been much worse maybe if you had used their gel. But I have seen the gel cause a problem. But I think for you it's that pressure of it, which is probably better than the mammogram, but still not unavoidable.
It's unavoidable to do the ultrasound that way. Yeah.
Jill Brook: And you had found an ultrasound gel called Eco View that advertises that it has no dyes, [00:38:00] parabens, or propylene glycol. So we'll put a link to that
in the show notes in case anybody wants to find that. Their website says that they, they offer free samples to medical professionals.
So if somebody wanted to let their patients try a little bit of a test
patch first,
they could do that. And then you had also mentioned that you've sometimes seen reactions when people get a mammogram and then an ultrasound in rapid succession.
Dr. Tania Dempsey: Yeah, because there's so much, it's pressing first, I mean, the mammograms are, I don't know, archaic. There's gotta be a better way. I just, I'm just saying there's gotta be a better way. It's so uncomfortable. You know, you're squishing, then they're moving. It's all plastic, like this plastic stuff that they squeeze your breast with.
And then, and it's very, you know, it's very uncomfortable. You have to hold the position a certain amount of time. Then they put you on, on the table and now they're gonna do the ultrasound where they're pressing, using gel and more plastic and more [00:39:00] whatever. So to me, that's like the double whammy. And so some of my patients don't have as much like local,
some of them have the local stuff like you because they have urticaria, pressure urticaria or vibrational reactions. But some of them, they just have the systemic effects. Like it just hits them, right, the mast cells start exploding from all that pressure, and then they have like, like you felt, right,
flushing or you didn't, you know, you felt like, blood pooling, right? POTS, you probably had a lot of the right, so some people have just the systemic stuff, even from all that. Not to say that people shouldn't get it right, but maybe it's, maybe you need to be premedicated more aggressively. And for you too,
maybe, maybe this is sort of like something that, you know, for the future we've gotta figure out how to prevent it.
Jill Brook: Mm-hmm.
Dr. Tania Dempsey: And I wonder if you talk to the ultrasound tech and you said to them, [00:40:00] listen, I'm really sensitive with pressure. Can you do it a little lighter? Can you get the same information without pressing?
Because I do think that some of them are like crazy hard when they pressed and some of them know how to get the picture. So do you know how hard she was pressing?
Jill Brook: Well, mine was actually like a big automated machine that did it. So she just put it in the starting position and the whole thing was automated after that. So maybe getting an actual human to do it next time...
Dr. Tania Dempsey: I've never seen the automated ones.
Jill Brook: Yeah.
Dr. Tania Dempsey: I've only seen them done by a tech. Wow. Oh, well that, well, that makes more sense actually.
Jill Brook: Oh, really?
Dr. Tania Dempsey: Yeah. Now I gotta, I gotta look at what these machines are like. So, so was it, were they doing both breasts at the same time?
Jill Brook: Nope. One at a time.
Dr. Tania Dempsey: Okay.[00:41:00]
Jill Brook: And I think she had to replace it on each one to start. Like she puts it on a starting place and then hits a button and then it goes from there.
Dr. Tania Dempsey: And did it feel uncomfortable when you were doing it? Like, did it feel...
Jill Brook: no.
Dr. Tania Dempsey: You didn't feel pressure, when it was happening.
Jill Brook: I mean there was pressure, but not like uncomfortable
or anything. And it seemed like it was pretty quick. I think it was just like 10 minutes in and out, so, um, so, oh, anyway, I guess another mystery.
Dr. Tania Dempsey: I know, I know.
Jill Brook: And luckily this was after I was on the progesterone, so my mast cells were stabilized a lot more than they would've been a
couple weeks sooner.
Dr. Tania Dempsey: Right, right. Exactly.
Jill Brook: But we did have one more question about that that came
in from a listener who's wondering, can you ever take progesterone purely for the mast cell stabilizing effects? Or do you need to first of all, have some hormonal problem to justify it?
Dr. Tania Dempsey: It's a really great question.
I would say that I don't think I've [00:42:00] ever given someone progesterone just for the sake of giving them progesterone, but I, but you know, as a mast cell stabilizer, but I don't like look for significant symptoms as long as there's something that tells me that there is something going on hormonally, and I would say that the vast majority of mast cell patients who, you know, are women,
have some kind of hormonal issue. So I can kind of usually find something that makes sense and then I'll use the progesterone. So it doesn't take that much because when you start to look at what the periods are like, whether there's PMS, whether there's there's increase as soon as someone says, as soon as a woman says, you know, the week before my period and a few days after I get my period
I feel the worst. I have more reactions. Hands down, like that's, they gotta, they gotta go on progesterone as a start. There are some subtle [00:43:00] symptoms, you know, that, you know, people may not associate with hormonal stuff, but I will know that it's likely hormonal and then, then we'll try it. So I would say that, again
there are very few women who have MCAS who don't have some kind of hormonal problem. I've never, I've, I've not seen it, is the point, which is interesting.
Jill Brook: And then one more related question to that. So does a woman need to be perimenopausal or later
to take progesterone?
Dr. Tania Dempsey: No. I have, I have given progesterone to 16 year olds, 25 year olds. They're not perimenopausal. They're significantly symptomatic. They may have polycystic ovarian syndrome, their periods are really irregular or they have a lot of symptoms related to their period. Or they're not menstruating regularly.
Like there are lots of reasons. And and I have some young patients [00:44:00] that do really well with progesterone only. Some of them don't wanna take a birth control pill. For some people, I, I will say that there are mast cell patients who do fine with certain birth control pills, and I have a number of of them that, that sort of controls things for them,
'cause it just keeps all the hormones stable so they don't have the fluctuations. But some women do not do well with birth control pills or they have contraindications. So that's where I will use progesterone only.
Jill Brook: And then the last listener question that we have is maybe a tough one, I don't know. So she says, when you have a lot of symptoms going on, it can be difficult to know what's caused by hormones
or menopause versus what's caused by MCAS. And she says that a lot of the symptoms that Dr. Anna Cabeca talked about sounded like mast cell symptoms. And so when should you suspect that your [00:45:00] hormones are the problem?
Dr. Tania Dempsey: Yeah, it's a great question and I think that if you work with a practitioner who, who, is willing to work with you, right, and, and understands that there is some trial and error that, that you know, that you're gonna deal with. And you're at an age when the hormones are likely to be involved on some level, then it probably makes sense while you're doing other things and trying to stabilize the mast cells and all that,
it makes sense to start looking at the hormones. I think that traditionally, because there are lots of reasons for this, one of them was because of the WHI, the Women's Health Initiative that scared women from using hormones. And I think since then there's a little bit of this taboo and hormones are dangerous and oh, we can't do it.
So I think that [00:46:00] we've sort of shied away and I think that there are a lot of us now who are saying maybe we should venture into the hormone realm sooner with women. Maybe they don't need to suffer as long. And because these hormone, many of them are mast cell stabilizing, really doesn't matter if you're, if you think it's a hormone problem only, or a mast cell problem. If you can indirectly help the mast cells by and also help the hormones, right, that may not be a bad way to, to, to, to try to try, you know, a bad route to try. So, so, so this listener, I mean, she makes a good point there. There's so much overlap with so many things, but because mast cells are affected by hormones, right? And are, are activated or stabilized by hormones, it's inevitable that, that there's gonna be an overlap in symptoms.
So I think that [00:47:00] it's okay to, to try hormones sooner rather than later. As a way of, again, calming things down, sort of like with you, right? You had these mast cell symptoms. You were dealing with food sensitivities. You were having a, you know, really hard time, couldn't figure out what the trigger was. You went on progesterone.
Now your mast cells are, are better. It's not, it's not fixed, right? But it's better, at least that set of symptoms that you were dealing with, right. So to me it's like, okay, like is there a real downside? Probably not. You know, I think women need to be screened and, and there are things that need to be, you know, like you had, you know, you do have to do a mammogram or a breast ultrasound.
You know, you wanna make sure that, you know, you don't have anything brewing there before you start going down the hormone path. But, but other than that, they're fairly safe. They're, they're safer than we've been led to believe. And so I think that it's okay to start talking to your doctors about it as one way to, to address the mast [00:48:00] cell symptoms.
Does it make sense?
Jill Brook: Yes. And I so appreciate that you are willing to take such a complex topic and a nuanced view and, you know, I'm laughing 'cause as you, as you talk about how every patient is so different and some react one way and some go the other way, I think how you can't afford to ever have an hour of your day where your brain is just off.
But we appreciated it so much. You're amazing, and this is such difficult, you know, information to come by. So, so I know that so many people are gonna be helped with this. So, Dr. Dempsey, thank you for your time. Thank you for donating your, your time and expertise this evening. We'll let you get back to your family, but thanks a million.
Dr. Tania Dempsey: Thank you for doing this. This was great.
Jill Brook: Okay, listeners, that's all for today. We'll be back soon with another episode, but until then, thank you for listening, remember you're not alone, and please join us again soon.
