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You may have seen my post on Instagram where I was talking about progesterone hypersensitivity. My guest today connected with me shortly after that went live and agreed to come on! She's one of the first people that is more on the practitioner side of things that I know of who's actually lived with this and dealt with it! She will be talking about how she's found ways to help support the body around this to become less reactive.
Today's guest is Sarah Tyler. She received her Bachelor of Science in Nursing from University of Alabama in Birmingham and worked six years in the University Hospital’s Heart and Lung Transplant ICU in Birmingham before deciding to become a Nurse Practitioner. Sarah attended Vanderbilt University where she obtained a Masters of Science in Nursing with an emphasis in Family Practice in 2012. She is an American Academy of Nurse Practitioners certified Family Nurse Practitioner. Nursing was always satisfying to Sarah because of its foundation in holistic healing theories that recognize the importance of considering the whole individual. She currently practices out of Denver, CO in a setting that balances conventional and alternative methods to optimize health and well-being.
Join us as Sarah discusses the mystery of the luteal phase rash and all about progesterone hypersensitivity.
Are you dealing with Progesterone Hypersensitivity as well? Share with me know in the comments if you have questions or want to share what works for you!
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
In this episode:
- What is progesterone hypersensitivity + what symptoms would you look for?
-
Sarah's personal experience with progesterone hypersensitivity
- Various treatments Sarah tried before getting a clear diagnosis
- What is LDA therapy?
- How pregnancy + conception affect luteal phase rashes
- What testing options are available from your doctor?
- Why you SHOULD consider trying an antihistamine (at least in the beginning)
Quotes
“Because my cycles were irregular, I had to give myself herbs to promote ovulation, promote my own progesterone, but every time I tried to regulate my cycle, I would get this rash.” [9:44]
“When you dive into progesterone hypersensitivity forums, a lot of people's experience is that you'll have a lot of flares during the first trimester, until that placental progesterone level start in increasing; and then once that happens, I don't know if immune system shift takes place, but the rash fades.” [13:23]
Links
Find Sarah Tyler online | Instagram
Healthy Skin Show ep. 250: Progesterone Sensitivity Rash
Healthy Skin Show ep. 072: Sex Hormone-Skin Rash Connection w/ Dr. Carrie Jones
292: Progesterone Hypersensitivity – A Personal Story of Relief w/ Sarah Tyler, NP FULL TRANSCRIPT
Jennifer Fugo: Hi, Sarah. Thank you so much for joining me today.
Sarah Tyler: Hello. Thank you for having me. Happy to be here.
Jennifer: Yeah. And I'm excited to have you here because we connected many months ago. You had actually seen a post on my Instagram where I was talking about progesterone hypersensitivity, and you wrote me and you're like, oh my goodness, I had this, have had … We'll go into that. And you're one of the first people that is more obviously on the practitioner side of things that I know of who's actually lived with this and dealt with it and actually found some ways to help support your body around this to become less reactive. So I'm so glad that you could be here today. And I figured, even though I did do a bit of a, I would say like a cursory review of like what progesterone hypersensitivity is. Do you wanna just define that for the listeners in case this is the first time they're hearing about what, like an actual reaction to progesterone?
Sarah: Sure. And so the term progesterone hypersensitivity is similar to the original term, which was autoimmune progesterone dermatitis. And so what that is, is your innate immune system reacting in various ways. As far as my situation, it was in my skin and through a rash to levels of progesterone. And so essentially it's an allergy to your own progesterone.
Jennifer: And that, when you think about it, is like kind of horrifying because it's a hormone our body makes.
Sarah: Right. And it's also necessary to conceive, and it's also necessary to feel calm as a woman, it's a calming hormone. And a lot of the time with the hypersensitivity, you end up having lower levels of progesterone or difficulty with ovulation. So that's sort of a piece of the puzzle as well. So you'll present with not only a luteal phase rash, so luteal phase of your cycle whenever post ovulation when you're progesterone levels should be rising that the rash will fade when you start your period and those hormone levels drop. But you can also have irregular cycles, infertility, et cetera.
Jennifer: Yeah. And so you've dealt with this personally. Do you wanna share briefly what your experience has been living with this?
Sarah: Sure. The issue presented for me when during my first pregnancy, it was my second trimester of pregnancy, and it presented as an extremely itchy, angry, bumpy rash that was only on my abdomen at the time. So every provider, every dermatologist, every fetal maternal specialist, my midwife, everyone said, oh, this is PUPPPs, which is an itchy rash that you can get during pregnancy, but then post-pregnancy, it should disappear. And so I was, I had my heart set on it disappearing when I had my son. And it is more common in your first child and if they're a boy. So I had all of those things. So they were like, yeah, this is pregnancy rash, it's gonna go away. No big deal. Meanwhile, I was like coating myself in zinc oxide, just any sort of thing I could put as a skin barrier.
And so like, I ruined all of those maternity clothes because I was constantly like covered in ointment. So anyway, I had my son very healthy pregnancy, healthy natural delivery. Following delivery, I would say the rash faded initially and then it exploded. My whole body from head to toe was covered. And it almost looked like, you know… It was blisters, it was raw, it was bumps, itching, burning, stabbing… It was worse at night! So I was already up breastfeeding, but then I was in pretty excruciating discomfort for a really long time. I had the rash for two and a half years, and it took me a really long time to figure out what it was and connect it to my progesterone because I'd always had irregular cycles. And so, yeah.
Jennifer: How did you connect? What, what dots did you connect or did you find somebody to help you figure that out, or what happened?
Sarah: So initially it was a bit of like, you know, survival mode. I had gone to an urgent care, a provider that I didn't know he had done a biopsy. I went to the University of Colorado. They did several biopsies. Everything was coming up as either eczema or spongy, spongy, spongy dermatitis, which is very non-specific and vague. And so I was given, you know, instructions to, I was doing steroid tapers just to survive essentially. I also simultaneously had really elevated liver enzymes and really high inflammatory markers like c-reactive protein. So I was just like a giant fireball of inflammation. I didn't have a cycle because I was breastfeeding for six months, and during that time I had, I wanted to sort of, I was using more traditional means because I didn't know as far as, you know, using alternatives while breastfeeding.
I wasn't sure about that. So I, I mean, the traditional sort of treatments are not awesome. So like the oral steroids for two months I did bleach baths. I was instructed to cover my body in Vaseline. You know, <laugh> not very therapeutic at all. No. So once, once I stopped breastfeeding, I became more interested in doing like all of the things that I would normally do for my health. And sort of I tapped into a Eastern Chinese medicine doctor. I was doing acupuncture, custom Chinese herbs. I did a repair restored gut protocol to sort of cover for any bad bacteria, yeast overgrowth, parasites, leaky gut, you name it. I did doxepin through the dermatologist, which is a traditional treatment. It's an antihistamine. And also they're like, you need an, it also has antidepressant properties.
I did whole 30 for an entire year and didn't really see much improvement there. And the rash was morphing the whole time. It would flare and come and go. I think it was in the summer of 2019. It was either spring or summer. I had also been to an immunologist and been tested for every allergy test that they had available. Nothing came up abnormal. I looked like the pillar of health. My liver enzymes had returned to normal. My CRP was down and so nobody could really figure it out. Because I'm an integrative provider, serendipitously we had just brought on a physician that was sort of old school allergist-immunologist that did an alternative therapy called low dose allergen therapy, where you inject very small homeopathic level antigens from foods chemicals and inhalants. That's paired with an enzyme called beta-glucuronidase that causes these antigens that are super, very low levels to sort of recirculate over and over again in your system, which raises t regulator cells.
And those guys like put the brakes on your overactive immune system. I had zero hope that this was gonna help me at all because I didn't know that I had an allergy. It's good for seasonal allergic rhinitis, you know, cat dander dog, you know, good old regular allergies. And so I had no hope that I was gonna do this. It is out of pocket, it's expensive, it's not covered by insurance, of course. I told myself, I had spoken to the doctor that sort of brought LDA to the US — Butch Schrader — because I had this connection with this physician that worked at my office who was bringing this therapy to Sound Clinic. And he had emailed Dr. Schrader and to ask, because at the time I had sort of realized that this rash presented mainly during my luteal phase.
Because my cycles were irregular, I had to give myself herbs to promote ovulation, promote my own progesterone, but every time I tried to regulate my cycle, I would get this rash. And so Dr. Schrader said, yes, I've seen this before. People are allergic to their allergies. This will work. And I was like, okay. So I did two injections. You do them two months apart, you have to do several lifestyle changes simultaneously. You essentially have to, for three days, sort of be in a bubble. Because during those critical days, you, if you come into contact with things, you could become sensitive to them so you could develop allergies if you have them during those three critical days around when you get the injection. So anyway, I did two of those injections. You have to pair it with steroids, you have to do an antifungal treatment prior.
It's very involved. That's why I don't recommend it unless it's like last resort kind of thing. My rash flared head to toe the first injection I got; it just went nuts. And I was like, well, that's something. And then in two weeks, it was gone. And so I was like, should I do another one? So I was recommended to do another one. The same thing happened, head-to-toe sort of flare, and then my rash pretty much faded out from there, which that was two and a half years later from when it started. And so in that interim, I'd had a miscarriage and a chemical pregnancy again, because of that progesterone hypersensitivity. A lot of that's common. And then sort of the pandemic hit <laugh>, so I kind of stopped trying to prioritize getting pregnant again.
And then things sort of were settling down. So I ended up going to well, I put myself on luteal phase progesterone because I was connecting the dots as far as thinking that that's why I could have miscarried. And so I went to CCRM because I knew I had an issue with ovulation, so I was just gonna go ahead and get some good old Clomid and try to get some ovulation rolling. And I did a test. The first test that they do is they make sure that your fallopian tubes are patent. And mine were both blocked, so they're like, okay, you're not a candidate for anything but IVF. I was like, oh, okay. So in my integrative background, I sort of researched blocked tubes, which I'm guessing just from an inflammatory standpoint of my progesterone hypersensitivity. I guess that's what had sort of led to that. I did castor oil, some Chinese herbs, some serapeptase, which is a biofilm buster along with my herbs to help me ovulate and luteal phase progesterone and had a very healthy pregnancy and now have a five-month-old.
Jennifer: And do you get
Sarah: That's kind of where I am now…
Jennifer: Yeah. And I'm sure everybody's wondering, like, do you still get the rash every month when you, well, I don't know if you're back to a normal cycle at this point. But do you, did you, how did you do during pregnancy? I mean, obviously, that's his place when progesterone is up and… How did that, how did that turn out for you?
Sarah: So what's interesting, I was terrified the entire time because I knew that like, you know, your progesterone is soaring during pregnancy and it's part of the reasons why it's sustained. But when you, when you dive into progesterone hypersensitivity forums, a lot of people's experience is that you'll have a lot of flares during the first trimester until that placental progesterone level start in increasing. And then once that happens, I don't know if immune system shift takes place, but the rash fades. And currently I'm breastfeeding. And for some people the rash does return when your cycles return after you breastfeed. So I'm crossing my fingers and I do feel hopeful now that I know what it is and how to address it. I didn't mention prior to doing the LDA, the alternative therapy for allergies, I did 90 days of Benadryl, which, oh my gosh, zapped my brain completely, but it made my rash go away.
So there's definitely like a histamine component and like a true, a true allergy would sort of respond to Benadryl in the same way. And so now I have like all these clues. I also have I think that my predisposition was a lot of stress. And definitely the gut was a piece of the puzzle I had. I had prior to becoming pregnant, I had been dealing with chronic constipation for a really long time mm-hmm. And so I don't really know what sort of magic recipe led to the progesterone hypersensitivity developing. But my stress levels dropped significantly actually during the pandemic. And so a lot of sort of things changed with my personal life and my stress went from about a 12 to, to about a two. And I think that allowed me to get pregnant. And I think that that's gonna allow me also to not have so much immune system dysregulation.
Jennifer: Yeah. So let's talk a little bit about, for women listening to this, and maybe they're unsure, they're going, wait, some of this sounds familiar, right? One in my research, what I had uncovered was that something in regards to birth control pills. I have one client who has had this and they had actually tried birth control pills and she seemed more reactive to that. But there's some potential tie to birth control pills, some potential tie to that I've read about. Any thoughts on these sort of like unnatural I gue or synthetic versions of hormones? Like does that possibly play a role?
Sarah: It does seem so. It seems that like a lot of these sort of mysterious conditions, every single individual is different. What's unique or what seems to be widespread is that there was some exogenous synthetic hormone at some point in every woman's life that has developed this condition. So for me in my twenties when I tried birth control, I like gained 25 pounds and became severely depressed, couldn't get outta bed. So I hadn't been on birth control my entire life because of that. So that was sort of the only thing. But then I had this pregnancy that sort of triggered it all. And so it's hard to know. A lot of times people are also in the traditional world treated with synthetic birth control when they have the condition. And sometimes it helps because you're suppressing your own endogenous ovulation and progesterone levels.
Jennifer: Wild. It is wild that it's kind of like what may not work for one person might work for someone else. And that's what makes this a very unique process. Fortunately, unfortunately…
Sarah: It takes some sleuthing. But one really positive thing is, there's a physician that's now doing the testing. So if any of you are developing rashes during that second half of your cycle, when your progesterone levels are present post-ovulation, you can now get a blood test for it. And I will drop his name, it's Dr. Jonathan Bernstein. He's out of Cleveland, Ohio. I think the test runs around $200 and you need a doctor's order or provider's order for that. So a lot of women are getting answers. And I think once you know that that's going on, then you can pull in your tools. And because when you're like thinking, is it, you know, the, is it the piece of bread I just ate? Is it, you know, something else? Like there's so many variables in the environment to try to pinpoint.
And so to have that answer there are a lot of different options for people. When I first started researching it, I remember some women having anaphylaxis during their luteal phase. So it can present as a rash and it can get as extreme as anaphylaxis. So the first articles, and there's like three or four articles available. I also did, this reminds me, one of them is a case study and it went through like different progesterone desensitizations, which I actually did that prior to the LDA and it didn't help me. I did oral progesterone, I titrated it up. It didn't help at all. But that's not to say that it couldn't help with someone else. And that's one of the theories why they think that it fades in pregnancy is because your progesterone is gradually increasing over time. I personally don't think that's the case. I think it's an immune system shift and sort of our more dominant immune system becomes a little less active so that we're not reacting to the baby. That's my personal theory.
Jennifer: And can I ask you, does this sort of underscore the need? And I think tracking, tracking can be very helpful, but I feel like for women who are cycling or even if you have an irregular cycle, like what would you recommend for them to figure out if it's, this is a luteal phase problem?
Sarah: So I think apps are really helpful if you're tracking your period, because you can track symptoms along with that. And I wasn't using an app at the time, but because my cycles were so irregular and every time I would try to try to get my body to ovulate, then I would have the rash. It was easy for me to put it together. But a lot of women that have regular cycles also have this condition. And so I am old school, I like, like printing out a calendar. And so if you're having a rash, you know, two weeks out of the calendar, then that's a big clue that you could be reacting to a hormone. People also react to estrogen. So estrogen's present during the whole cycle. So that's like a whole nother ball of wax. But the progesterone piece, you know, is a little more predictable because it is the second half of your cycle post-ovulation.
Jennifer: Yeah. and with…
Sarah: But tracking is important.
Jennifer: It is. And, and if you believe that you have this, and I know that you have a clinic and we'll put all of your links to it's soundclinic.com Yes. So people can contact you through there. Cuz obviously you do work with people but they're gonna track. And then what's the best next step if you really do believe that you have this issue? Like do you think it's worthwhile to get some sort of testing done to determine progesterone as the specific problem? Or could you possibly just proceed forward like, oh, this is when it flares consistently, I've tracked for six months, this happens <laugh>.
Sarah: Yeah. So as someone who sort of practices functional medicine, I always would as part of the treatment protocol or plan, sort of focus on those foundational pieces of health. So that would be, you know, optimizing sleep lowering stress, sort of evaluating their nutrition to make sure that they're eating, you know, a wide variety of whole foods, moving their body. I couldn't think of physical activity and then that spiritual component that can sort of get squelched in our culture sometime. And I think of the spiritual component as something that's really broad. Like, you know, either being creative, connecting with other humans, spending time in nature. Yeah, having some sort of ritual. So I would incorporate sort of a, I think it would be important to incorporate those foundational pieces of health in addition to going ahead and, you know, trying to, to suppress the reaction. And so just doing a trial of it based on the person's preference. I mean, what I did prior to moving from Benadryl now when I ever have any sort of itchiness, I use natural antihistamines. And so I think, you know, putting together a little gut health support, gut healing protocol, trying some antihistamines focusing on those foundational things. And I think if it is a hypersensitivity progesterone happening, you're gonna respond to antihistamines and which is…
Jennifer: Really cool. Interesting. Yeah. So that would be another potential thing to try then, because I know a lot of people are like, I don't wanna do this, it's a medicine, but like we can all get access to like Benadryl over the counter.
Sarah: These other, I mean three like very accessible antihistamines that are, you know, traditional over the calendar would be Benadryl, Pepcid, which is an H blocker- so it has an antihistamine property- and Zyrtec. So if you did that, a trial with that during, you know, for two to three months and your symptoms would probably go away, then that would be another clue that you're dealing with this. Because I wasn't sure if I, like from an autoimmune standpoint, I was always confused because autoimmune conditions typically don't respond to antihistamines, but I think that that's why they renamed it. They renamed it progesterone hypersensitivity because the autoimmune it, it was named that because we're reacting to something inside our body, but it's essentially a true allergy, an IgE-mediated allergy.
Jennifer: Yeah. And I wanted to also clarify, you had mentioned something before we started talking, most people are thinking eczema rash, but you had another patient recently that they had some other type of rash going on. So what type of rashes could show up during this gluteal phase?
Sarah: Well, even on my own body, depending on where the rash was, it was very different on my arm than it was on my leg. On my leg. I had these, these papules that were extremely painful and they would scab and not heal and they would bleed. It was the strangest thing. And then on my arm I would have like, it was very spongiotic , just inflamed eczema presentation on my fingers. I would have dyshidrotic eczema. And so, and then the, a patient that I saw recently that was having a rash during her luteal phase, she has classic urticaria, which is hives, you know, that moves around your body, well, presentation. And so it really just depends. And like I said, you can have rashes, some people even have anaphylaxis, which is really scary.
Jennifer: Yeah. Oh my goodness. I mean, I will say that while I'm sure it being in this was not fun and you were probably like why? Please. I am grateful that you were willing to come here and share your experience because there's just such little information and it's claimed that this is rare, but I do wonder if it's rare because no one really looks for it.
Sarah: Absolutely. And that was the frustration when I sought out care at you know, a university research institution is, I was like, can you please like somehow like test me for…Cuz I was very suspicious. And again, it was just kind of like the bandaid of here's some steroids just here, some Vaseline take some bleach baths so you don't get staph. Goodbye. You know, it's just, yeah. Yeah. But I do laugh about it now. It wasn't a laughable situation at all. It was extremely painful, it was extremely stressful. It was traumatic in a way, just having to deal with being a medical provider, having this mysterious rash, dealing with traditional and alternative, doing all the things and, and it taking a really long time for me to understand what was going on and, and how to deal with it.
Jennifer: Well I I just wanna thank you so much for being here today. I really appreciate it. And also as I, I mentioned initially in the intro, you are a practitioner, so if people, do they need to be in to live in your state or can you work with people outside of Colorado?
Sarah: So yeah, I, I do telemedicine primarily. Now my office is located in Denver, Colorado, but I live in the mountains in Telluride, Colorado. So most of my appointments are virtually, so I do see people out of state. We do accept insurance, which is unique to our practice. And so that's sort of, I think allows sometimes that prevents people from outta state, depending on their insurance from being able to come to our practice. But I do see a lot of out state people. Okay. So you're welcome to reach out. We have a website, sound clinic.com, and you'll be able to see my bio and the other practitioners. We have a really awesome, unique clinic.
Jennifer: Awesome. Well thank you so much, Sarah. I appreciate your time for having me. Yeah…
Sarah: Just sharing stories.
Jennifer: It, it is so important that we share our stories, right? Because you know who, unless there's, unfortunately, a medication to solve this, there's not a lot of research being put into this area.
Sarah: Exactly. I will say, I don't wanna like plug Facebook or anything, but in this whole journey, there's a, there's several Facebook groups that I've sort of tapped into related to just being a provider. There's a mast cell activation is a condition that's linked a lot of the time with progesterone hypersensitivity and sometimes gets confused. So there's both a mast cell activation Facebook group and there's a progesterone hypersensitivity Facebook. So that is a good resource because then you can sort of, you see all the different, sometimes it creates more anxiety, but a lot of times I just think take it with a grain of salt and use it as far as a collection of information, what people are using to as treatments, what's been helpful, what hasn't been helpful, and also just you know, to be supportive because it is a, it's a hard thing to live through.
Jennifer: It is, it is. Well, thank you so much for being here and yeah, thanks. Who knows, you may be back as you find more things to share with us, but I, it's so great to have you and thank you so much for the time.
Sarah: Thanks so much, Jennifer.
