Episode Transcript
Gynecological Issues and Pregnancy
[00:00:00] Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today I'm honored to speak with Dr. Shanda Dorff, who is a physician in Shoreview, Minnesota, although she does telehealth visits with patients all over. And her website actually states that "her clinic is dedicated to caring for Ehlers-Danlos syndrome, mast cell activation syndrome, and postural orthostatic tachycardia syndrome. We care for and about the most complex patient needs and conditions."
So we don't see that very often. Even better, dr. Dorff has published on some issues related to pregnancy, painful sex, inflammation of female sex organs, and if you've ever had any of these problems, you probably know it's not easy to find a physician who understands them and their potential connection to your complex illness.
She wrote the chapter on obstetrics in the book, Disjointed about Hypermobile Syndromes. She was a co-author on the very important publication that we discussed with Dr. Larry Afrin about why it's important for physicians to have multiple ways to diagnose mast cell activation syndrome so that more patients can get access to care.
She leads lectures about complex chronic illness for other physicians, and as you'll soon learn, she does so much more. Dr. Dorff, thank you so much for coming today.
[00:01:30] Dr. Shanda Dorff: Thank you. It's a pleasure being here.
[00:01:32] Jill Brook: So for starters, do you mind telling us a little bit more about yourself and your background and how you came to specialize in complex patients? Cuz not very many physicians do that.
[00:01:43] Dr. Shanda Dorff: Sure. And actually I find it very fascinating and one of the greatest fulfillments in medicine because it makes me consistently get to feel like I'm really using my brain and my training as opposed to almost like a knee-jerk reaction of just waiting for a test result, which then tells me which specific thing to do either way and almost like a machine.
And I really love actually getting to think and it's something I've adored my entire life. But I was a child who grew up in an area where there wasn't a lot of access to care, especially enough for complex conditions, and was a child that was often sick. And As a result, I decided that there had to be a better way to do things.
And so at age seven I decided what I was gonna do for a career was to become a physician and try to find a better way to do it. And I now know thanks to the help of a lot of scientific data and research, that there's more options available now than what there were just in general for anyone, regardless of where they're located compared to when I was growing up and probably aging myself when saying that.
But also that sometimes it just takes finding the right individual, even when the options are there. It's just, it may not be known or on their radar screen for somewhere. They may not have the time or ability to do certain things, even if they really wanted to. No matter how much the patients wished that they had access to it.
And so I beginning looking at paths in first grade to determine the best route that I wanted to take to achieve my career goal of becoming a physician. And was actually kind of annoying, frustrated, they told me I still had to finish elementary school and even graduate high school and stuff before I could do the others, but I still did it anyway.
And throughout that time I was also someone that was always extremely creative as well as very science minded. And I found a lot of it actually really overlaps and it takes some of the greatest creativity in the scientific community to come up and discover new things and to have new, different theories, new ideas of things to investigate or experiment.
And so I think they really overlap quite beautifully, but it did really confuse ones in my school when they would do various different testing for right brain versus left brain, where the right brain being a lot more creative, the left brain being more analytical thinking, processing wise, and I often ended up having to do the test multiple times because they kept expecting me to be very, very much left-brained based on my academic performance, but was always testing pretty much off the charts, right-brained on there, and it's just who I am.
I've always been someone that adores all aspects of it, and then, Upon graduating high school and I had done a lot of college work in high school as well as dual credit and AP classes and was assigned tutors and different college classes and AP classes while still in high school. And, you know, sometimes it can also be a little bit awkward when the ones that the teacher assigns to be the tutor are ones that are multiple years younger than the other students or when they're someone who does the teen court program.
Like what I, which isn't actually available in the area where I live now in Minnesota, but where I grew up it was where when juveniles were convicted or found guilty of committing crimes in the real court system, they had the option for their sentencing to either go through the regular court system with adults as their attorneys and jurors, or they could go through the teen court system strictly with regards to their sentencing, still following the guidelines that are required based on whatever particular conviction they had where they had other adolescents that were their attorneys under the guidance of licensed, regular real attorneys and a real judge there. But then it was also adolescents who were their jurors. So then they truly had a jury of their peers with regards to their sentencing, still following within all the guidelines for minimum to maximum, everything like that. But as a debater, they pretty much all with only one exception, made me the prosecuting attorney, which doesn't exactly work best to be making a lot of friends when you're prosecuting a lot of your classmates.
But time it was still allowing for more creative outlets and things too. But when I graduated, three days after I graduated high school is when I started medical school and I did an accelerated program where you're doing your undergraduate degree at the same time as your medical degree, just taking more classes at once and going year round.
So that way you do all of the same stuff. It's just that you finish earlier. But one of the things that made me really like and choose that particular program was the fact that you actually got to start spending more time with patients in the very beginning literally your first day or two, depending on which day your rotation started.
So that way it helped you to better apply, what you be learning, whether it be in the undergraduate curriculum or in the professional medical career training curriculum. So that way it helped you better remember it, retain it, apply it, which made for me it a lot easier with regards to testing and things like that.
Because when I see stuff, I apply it, it really sticks with me. And that was something that I really appreciated about that program. It reminded me a lot also, cuz I had already done about, let's see, it was five, six years of volunteering at my local hospitals and stuff and shadowing and shifts throughout all different departments of the hospital system before I finished high school and my last few years of medical school because I wanted to truly verify if I still wanted to go into emergency medicine, which is what I originally was thinking first if I wanted different, especially before I was finalizing the last few you know, career paths, curriculums, planning on applying for residencies, things like that is, I actually spent a full year just working in the emergency departments and I enjoyed it, but I also found myself thinking that I wanted to know more.
I wanted to get to know beyond just whether they lived or died in the moment. I wanted to be able to get to know them, spend more time with them, try to help prevent them from having emergencies, though do still understand that emergencies happen and some just can't be prevented. But also help them understand how to be able to take care of things either on their own or to better be able to recognize what is stuff that could be done at a regular clinic versus an urgent care versus an ER.
You know, all of those types of things. And so that really isn't something that works practically to be able to have happen in the emergency department. And so that's what ultimately led me into family medicine where get to do all ages, prenatal cares, deliveries, procedures, all genders. And it lets me get to be able to see multiple generations and the full beauty scope and diversity of all that life entails, which then encompasses much greater complexity.
It does clinic cares. It does hospital cares. Like I said, you can do obstetric cares, all of it. And I adored it all. Again, kind of more of the very diverse varied background on there, but it was so much fun and I loved it. And it was while in residency doing some rotations with different specialists between geneticists, sports medicine doctors and dermatologists who were evaluating their patients for connective tissue disease.
And they would ask their patients to do various different hypermobility assessments and the patients kind of looked at them very surprised and almost kind of grossed out, like, oh, what are you talking about? Oh, what? And to me it seemed really strange and kind of bizarre that they would do that cuz it just seemed like they were just kind of trying to drag their feet.
And I didn't really understand. So I would demonstrate. I was like, you know, this, this, this. And I just watched their eyes looked kind of even more like really disgusted and was a little confused why. And then after the different assessments, the various different specialists I was rotating with, kind of whispered to me as we were either exiting the door right after we stepped out the door that I needed to get things checked out.
And so I remember when it was time for me to go in for my annual checkup with my regular physician, I asked her if she thought that I should get evaluated for it and what she recommended. And I was told initially that it's something that's so rare that would never encounter in reality.
I was also told that it's something that only makes a difference if you're going into the National Football League and wanted to know if I was planning on changing careers and professions and while I don't have a problem with football, and sometimes I think it's a lot of fun. I'm definitely nowhere near skilled enough to be able to even come close to being able to catch the ball on the sidelines, let alone playing professionally for it.
And so the more I was rotating with people, the more that they were seeming like it made a difference to them, but yet I was told that it didn't. And so I started doing a lot more research and reading on it on my own. And at the same time as if I found any of the information that I thought was particularly beneficial or useful for many of my patients, I also shared the information with them.
And the more I was reading, the more it seemed like it was making a difference and that it wasn't actually as rare as what my primary physician had alluded to. And so when I asked her at that point, there was three years in a row when I went in for my annual checkups and each time was just basically dismissed.
I finally asked her at the last one because by that point my husband and I were considering in the like next few months, not immediately, both in the next few months to try to plan on when we wanted to start our family. And I knew that it could potentially make a difference for pregnancy as well as genetic inheritance patterns.
And even just for my own health, I wanted to know either way. And that I was fine with the outcome either way but I just wanted the information. And I consider many ways knowledge to be power and I wanted that power to be able to know for myself, but also for my patients. And so she kind of seemed a little frustrated, but essentially told me that she could tell that I wasn't going to give up on it.
So she gave me a referral to meet with a kineticist who was since retired. But after a few months, I got in with the doctor, and the doctor confirmed classical Ehlers-Danlos syndrome in myself. And provided a list of some different recommendations. And I went back to see my doctor afterwards and I knew she had gotten the note, but I also brought a copy of it with me, just asked her if she was comfortable following those recommendations.
And meanwhile, I had also gotten a letter that the doctor had retired within about a month of when I saw her. So I barely got in and was very fortunate that I was able to see her. And I felt kind of disappointed and a little disheartened that I was told that would not be willing to follow any of the monitoring or recommendations because didn't think it was necessary since was not a professional athlete.
And so it was at that time I actually decided that while I knew things to do for myself and was gonna be very proactive at trying to prevent any complications or problems for myself, but that I knew there were some things that I couldn't do alone. I also knew from a like licensure standpoint that I could never write an order for myself, even if it was an order for something as basic as a pregnancy test, which are available over the counter or an order for, you know, regular Benadryl or Tylenol, that's also available over the counter. If I wanted it to be something that could ever be in a medical record or stuff like that because you can't do anything for yourself or your immediate family.
I certainly had no problem doing different monitoring and things like that for my own patients, but I wanted to make sure that I wasn't falling through the cracks either. And so that's when I decided that as much as I really enjoyed just personality wise, the person that I was following with that I had to change primary cares and did after that.
But over the course of those three years, when I was doing a lot more reading and a lot more reading also began having far more patients that I was working with who had these conditions. Sometimes there's multiple different ones and a single family, but again, when you're working with conditions that have genetic components, it's not unusual to have multiple family members following with the same individual.
And after I graduated residency and I was in a private multi-specialty group practice continued not only to have some of the ones I'd previously worked with to follow me, but then had more patients that came in and it was again wonderful. I was doing what they call full spectrum. So clinic, hospital cares, prenatal cares, deliveries, urgent cares all of it, the newborn rounds and it was a lot of fun.
But after I had my first child about a year later, and he is incredible by the way, but I'm also extremely biased. I found it to just be very difficult scheduling wise to be able to cover two hospitals, the clinic and be the only one at that time that was doing the prenatal cares and deliveries from my specialty in my group.
So was basically on call all day every day and had to make sure I was never traveling pretty much during any patient's third trimester. Because sometimes babies come early, you know, we like to predict or plan and they don't always pick their due date. As matter of fact, most babies are not born on their due date. I know mine certainly were not.
But they picked their own perfect days just for them. And that was why I then ended up changing from doing full spectrum to doing just clinic or outpatient cares to try to allow for better control of my schedule. Cuz my husband used to have to travel a lot for work, which meant I had to be able to get to the daycares before they closed.
And it's not as though I could bring my children into the hospital and just leave them in the, like, waiting room or anything, or bring them into like a delivery suite when having a patient pushing or anything like that, not only is it completely inappropriate unsafe unsanitary here, it's not appropriate to have the other staff watching.
The patient. They need to be able to focus on the patient themselves, and it's not safe to leave a young child loose to try to be destroying the break room or cafeteria fridge or whatever is in there. Not that my darlings ever would, any mischief.
[00:15:04] Jill Brook: Never. Never.
[00:15:06] Dr. Shanda Dorff: or at, not that they claim.
[00:15:07] Jill Brook: Yeah. It sounds like you are the least burnt out physician that could exist. You have had this burning passion since you were seven years old, and I wish that we could offer some of that too. I know some of physicians who struggle with burnout but you have the left brain, right brain thing, and then on top of that you had your own personal experience.
And so I can see where that combined to just make you, I mean, it sounds like a dynamo when it comes to this complex stuff, but I guess I'm wondering, so I know that like when I see my physician, my normal physician, I get about six minutes and he will leave, even if we're in the middle of a sentence, he will leave at six minutes.
And so I have learned to keep it really short, really specific. But I guess what. I try! So now that you have a practice that is dedicated to these difficult, challenging, complex patients, what do you do differently than what you would find at, say, like my conventional clinic where it's, you know, six minutes per patient?
[00:16:14] Dr. Shanda Dorff: Yeah. And so when I decided to open up my own clinic, which wasn't an easy decision to make because I absolutely loved and adore my colleagues when I was in the group practices and stuff, a matter of fact still absolutely adore them. I think they're amazing individuals great friends and wonderful clinicians themselves.
But I really felt that from a Hippocratic Oath standpoint, I had to make sure I was ensuring meeting my patients' needs. And for me, I wasn't able to find a way to have a consistently work well with the typical model that is available where don't have as much time. Because the conditions that I work with, while beautiful, are very intricate.
It is super easy and fast to get in and out if it's strictly wondering, does someone have strep though? Do they have an ear infection? Do they have a bladder infection? You know, are they pregnant? Yes or no? Those types of things. Even wondering is there a fracture or that type of stuff, because you get a lot of information from the different imaging and you can look at that, all of that's able to be a lot faster than stuff that involves the entire body.
And so that's when I set up my own clinic. I purposefully designed it in a way to have a lot more flexibility with time, but I also wanted to make sure to be available in a much more timely manner for the established patients. Because when I was in the group practices, I know that was something that was very frustrating for someone when they try to schedule follow-ups.
Cause they're booked out so far in advance that it would take them a long time to get in and sometimes they would then be needing to vent afterwards where they felt like they had to be seen sooner. So they either got frustrated that it had to wait cuz there wasn't an opening, or if they saw someone who maybe just was really on like, I'm not sure specifically for this particular condition.
And so they couldn't get the answers right then and there at those appointments and. That's where I decided the best way to ensure meeting all of those needs was limiting the number of new patient visits per week. Because those visits take the longest by far. Matter of fact, in my clinic they actually block an entire afternoon.
The new patient visits are usually three to four hours, but I've had some that have been around eight hours or so, and there's no specific limit on there. And it's just a flat gray form regardless of how long it takes, because I wanna make sure that we have the time to go over everything for them from literally there in the womb, in utero to present history, as well as detailed exam, creating a detailed plan, placing any orders that are determined to be necessary, reviewing it all, answering any and all questions, whether it be theirs or even if they have loved ones in the visit, that they want to be in the visit.
If they have questions regarding the patient's cares, then to make sure all of it gets addressed. That's all documented and do all the documentation during the visit. So immediately afterwards the patients get copies of everything, including copies of the orders and things too. So that way it reduces any confusion or potential misunderstanding or them feeling like they're in the middle of a lecture hall or having to feverously be taking notes, things like that.
And so we limit the number of new patient visits per week to ensure able to get established patients usually scheduled within one to five business days, very rare exceptions being around holidays or things like that. And I wanted to make sure my initial goal was one to three business days, but then I've found that now sometimes it needs to be a little bit more flexible around the one to five on there, but most of the time it's still one to three.
The one to five allows more if the patients have less flexible in their schedule such as if they are working with other clinicians such as a physical therapist and they don't want it to conflict with those appointments, their own work schedules, their children's appointments, or their parents' appointments or spouses, you know, you name it.
it's mainly just the goal is to get everyone in to make sure all their needs are met and that we can work together to ensure not only accessibility, consistently working to improve things.
And once they're established, they have a free five minutes every week, use it or lose it as well. And that's for questions, refills, updates, forms, prior authorizations, those types of things. Clarification if they're wondering about something or if they're wondering, do I need to go in to see this?
Should I do this or that? Or, I tried this. Here's what happened. Now what's my next step? Or just giving me little updates on things. And so I purposefully built that in too to try to make it so patients wouldn't feel reluctant or afraid to have to reach out or risk things potentially getting really bad before they would seek cares because they didn't want to risk having a bill or things like that.
And that's why I have some patients that will purposefully send messages and list at the top of 'em. Please keep to five minutes or things along those lines where I'll answer as much as I can within the first five minutes, send them those answers, and then pick up where I left off the next week and continue to do that on a five minutes each week basis until I've gone through to answer all of their questions, to keep their costs down.
[00:21:02] Jill Brook: Wow, that's cool. And then it also keeps you familiar with all of your patients because you don't go eight months without seeing someone or talking to them.
It's funny because when I was about six years into my 17 year diagnostic delay, I went to somewhere in Minnesota that I thought was the best, greatest place to go. And honestly, it kills me.
[00:21:24] Dr. Shanda Dorff: It probably had great marketing.
[00:21:25] Jill Brook: You and I missed I also missed Dr. Greg Plotnikoff, who were right there, right. So close in Minnesota!
[00:21:31] Dr. Shanda Dorff: He's wonderful too.
[00:21:32] Jill Brook: Yes. And my experience at supposedly the, you know, Greatest place on Earth, I think cost me another seven years. And so anyway, we're glad to tell the world about you.
Now, in 2018, you published a case series along with Dr. Lawrence Afrin and Dr. Tania Dempsey, who have been on this podcast a few times. And you guys discussed five female patients, experienced pain during sex and some other gynecological symptoms, and you connected that back to this little cluster of syndromes we deal with here. Can you talk about that and what you found?
[00:22:12] Dr. Shanda Dorff: So one of the biggest things to keep in mind with that case series is that it was involving patients who happened to have mast cell disease, but were having what we call refractory gynecologic conditions. And so they were having symptoms involving the genital urinary tract of what would be involving the vagina, the uterus, the vulva, and these individuals were trying the more typical gynecologic interventions and we're not being able to get the results or response to treatments that they would like to have had, nor the ones that their doctors were anticipating.
And so when try their typical stuff and it didn't work, that's when, again, getting back to that creative side, thinking outside of the box. And so that's where looking back to other conditions that they have, and we know in those particular individuals who happen to have mast cell activation syndrome, one of the four body systems with the largest concentration of the mast cells is the genital urinary tract.
And so that means that this condition could be significantly playing a larger role for it, cuz those four body systems are the GI tract, the genitourinary tract, the respiratory tract, and the skin. So while the mast cells go all over, that's where they're in some of the largest concentration. So that's why they can be some of the most frustrating or most noticeable for individuals in those particular systems.
But the skin includes not only when people think of the skin, but also hair and nails as well, just fyi. And so in those particular patients, we decided, you know what, let's try again using our right side of our brain, thinking a little outside the box, because you first wanna do the initial typical routine stuff first, the regular standards of care for the conditions, because those are ones that would be most likely to be able to make a significant difference for anyone with those symptoms.
But in these individuals, they were not making the difference that was needed. So, Took a little bit of a step back and said, well, here we know they have a lot of mast cells in those specific organs and parts of the body. We know that they've had struggles related to their mast cell disease in various different forms before.
So let's see if we target the mast cells in those areas of the body to see is that gonna be able to take care of things. And an approach that I tend to prefer whenever possible is if the individual has what I call a localized symptom, which just means involving just like one area of the body at a time, as opposed to what they call generalized or the entire body all at once.
I prefer whenever we can to use a more localized or isolated intervention as opposed to something that will go all over. we knew that it was one specific body region that did happen to have a potential entrance point to there because there is an opening to the outside world for those individuals.
And so that's why then did mast cell targeted interventions transvaginally. It was done depending on which specific patient in the case series you're referring to, either as liquid cromolyn that was just squirted inside the vagina. And that is a mast cell stabilizer, and that's literally it's pharmacologic class where only 1% is able to get absorbed to go beyond where it's initially put in or that system where it's put in the other 99% stage just right where you're doing it just to help the mast cells.
So it's not a steroid, it's not antihistamine or anything like that, it's just a mast cell stabilizer. Or others use liquid antihistamine, whether it be ones that are already available in the liquid form, like a liquid Benadryl or ones where if they dissolve like a tablet or powder in water to squirt inside.
I know Dr. Afrin tends to describe it as a douche. On there and depending on the patient's, you know, familiarity with different terms, it literally, it's just meaning putting it up inside the reproductive outlet at that point. And the results were actually very fascinating and very impressive. For some individuals, it got rid of their pain.
Others, it stopped the severe heavy bleeding. I remember one particular individual who was a topic in the case series actually described things as unfortunately, because the periods were so heavy and so awful that a shower actually they said, looked like a murder scene on there because of how much blood was there.
And it was not at all any trauma. It was not anyone getting injured, it was just because they were bleeding too much. And that's why they wanted to first try doing hormonal interventions and other stuff first to try to ease and stop it. And that's pretty standard to try to do those things first. But that wasn't able to work for that individual.
But then with inserting the mast cell medication in the vagina, it got rid of it. And the mast cells typically respond within seconds. Rarely does it take minutes. And so these were getting really quick results. One of the last patients actually had even helped their postpartum bleeding that had been very prolonged and heavy when they wasn't responding to anything else.
[00:27:19] Jill Brook: Wow. So this is really amazing and I have sometimes been privy to conversations among the mast cell experts where I just have to laugh sometimes because it sounds like after this some were emboldened to, as you say, you know, kind of squirt mast cell stabilizers or antihistamines all over the place, but it seems like it has worked beyond just these five, right?
Like would you say these five were special five, or they were just the first five and you've seen a lot of success doing similar things since.
[00:27:51] Dr. Shanda Dorff: They probably weren't the first total five, but they were at least the first five that made it into print, and they definitely have not been the only five at all. Like I talked about a little bit ago still, if I have a patient with these symptoms, I recommend making sure things get evaluated first to see is there any other issue going on, whether it be a problem with like a retained placenta, such as in the case of the prolonged postpartum bleeding which could be causing other issues.
Was there a severe tear? Was there a problem with like an endometrial cancer, other entities even with regards to pain? Could it be pelvic inflammatory disease such as from gonorrhea, from chlamydia? Could it be related fibroids, endometriosis, adenomyosis, all of those types of things. I think it's extremely important to make sure that those things get evaluated and whenever possible are able to get treated.
And some of 'em are like fully curable a lot easier than others. Like for example, the infections that I listed are ones that the treatment for them is a lot simpler, easier, and faster than intervention to try to cure an endometriosis. For example, or even an endometrial cancer. And so I don't wanna risk becoming too tunnel visioned by thinking things in a mast cell patient can only be related to the mast cells.
But I wanna make sure that it all remains on the radar screen. And getting back to that, you know, larger thinking variety or saying, always remembering that just because someone has mast cell disease, it doesn't mean that they couldn't possibly have something else. But it also means that it could be playing a role too, and just not wanting to forget about it when the other things have been tried or evaluated and it's not working.
That's when absolutely try it. If they happen to already have some of the mast cell interventions available and they're just wondering like, Hey, is this gonna be something quick and simple? Many times they could try it as long as they check with their doctors first and make sure it's safe and okay for them and doesn't have any ingredients in it that they're known to be allergic to.
It's wanting just from a general safety standpoint to those types of things, because it typically would result in a response within seconds to minutes to be able to let them know, Hey, is this from my mast cells or from something else? Such as if you're starting to get kind of flushed, really itchy skin, if you just put a little bit of some like topical cromolyn on it, for example, does that work to get rid of it right away?
If so, then we know, okay, this wasn't an infection, this wasn't something else is strictly from the mast cells, cuz that's all it is. It's just a mast cell stablizer. It's not a steroid versus like topical steroid creams or even steroid pills could help it if it was mast cells, but it would also be treating other autoimmune conditions and things like that, that the cromolyn would not.
So that helps to better distinguish between them.
[00:30:33] Jill Brook: That's just amazing. And that's just so encouraging for anybody who's been struggling for years. And to think that if their doctor hasn't thought of mast cells, that they literally might just be minutes away from getting relief. That's incredible!
[00:30:47] Dr. Shanda Dorff: Yeah.
[00:30:48] Jill Brook: Can we expand the topic a little bit because in 2020 you published again, along with Dr.
Lawrence Afrin, the first and only review of mast cell activation syndrome in pregnancy, delivery, postpartum and lactation. And I know this is a really big concern among some of our listeners because obviously pregnancy is already nerve wracking enough even before you add MCAS to it. Can you talk about that?
[00:31:17] Dr. Shanda Dorff: Absolutely. And what actually inspired me to write that review article was because of challenges that I had with one of my own pregnancies. And it was to me, kind of mind boggling that when I went in for cares was told that, well, we don't know what we can do. There's nothing we can do because you're pregnant.
Like we would know how to treat the mast cells if you weren't pregnant because you're pregnant there's nothing we can do. And I was like, well, one, I guarantee you that every single patient is the result of someone being pregnant at some time. I also guarantee that I am not the first person with mast cell disease to ever be pregnant, nor am I most likely the first patient that they had ever had to be both pregnant and with mast cell activation syndrome at the same time.
And so that's when I decided, well, all of the information is out there. It just has to be compiled or gathered. And if they feel like they don't have it as a single resource, and that's what they're gonna require for them to be able to know or feel comfortable about what to do. Then I kind of put the task upon myself because I wanted to make sure the information was out there if it wasn't already available.
And so that's why I then said, okay, you know what? Let's do this. But I had to make sure that I waited to do it until it was at a time where I was able to. Just from like a, a health standpoint and everything else. And so that's what had led me to it. And I kind of had my mind thinking about the different ways of approaching it from the very beginning during the pregnancy when I had moments available.
But that's where the inspiration came from. And I wanted to try to make it a comprehensive, easy to follow resource. And I didn't want it to be really divided out into multiple different publications because I was concerned then people might risk falling through the cracks, or they might just assume whatever they did during pregnancy would be automatically the same.
And there's very different safety categories for some of the different medications such as with pregnancy versus with lactation and things like that. So that's why I wanted it to be more all encompassing as a single resource and try to put what hopefully was helpful tables and charts to be able to not only be able to see what the meds are, what the doses are, how you can use them, that type of stuff in the different pregnancy or you know, entire conception to finish with breastfeeding if the parents choose it to breastfeed ,that is. All as a single resource. But I also listed with graphics that I created showing how it affects the entire body to hopefully try to make it turn light bulbs on to have it on the radar screen for other clinicians where if someone is having symptoms involving two or more body systems, I should at least think maybe this person is someone with mast cell activation syndrome.
It doesn't guarantee that they do have MCAS just because they have two body systems experiencing symptoms, but wanna make sure that it's at least there. Something for people to be thinking about to have on their radar screen. And many of the interventions are things that are available over the counter already to hopefully make it more accessible because not all labs are able to do the lab testing as well as in some of the more acute settings. One, you don't have time to wait for the lab results. You treat the patient, you make sure that they are okay, but wanting to make sure that doing it in a way that's safe for them as well as safe for either the unborn baby or the new baby, depending on which category you're looking at at the time.
And so that's why I went about doing it and trying to make it in a way that would be most accessible. And even just doing like a brief overview of how they could diagnose it too, because I know that in general most of the ones doing the prenatal cares are ones that are focused on the mom and the unborn baby, and they don't tend to have as much time available to be doing a lot of detailed workups.
They would tend to refer them to either their primary care clinician or to an allergist or to a hematologist or to anyone that they can find, and sometimes they still have difficulty finding anyone, but I wanted them to at least be able to see some of almost like the methods to the madness or where in the evidence and the literature, the stuff comes from, because it's all evidence based.
So that's where I did, and I wanted to make sure also the patients could be able to see that there are options out there, that they are not just stuck suffering because they're pregnant. Interestingly though, there are many patients who say that sometimes they felt their best of all when pregnant. Which to me thinks back to, okay, this is someone that might end up having a mast cell disease, even if it wasn't known at the time.
And the reason being, as you probably discussed with Dr. Dempsey and some others in the podcast previously, is that the hormones also influence the mast cells. You know, we talked about the genitourinary system being one of the ones with the largest concentration with regards to estrogen and progesterone, for example.
Progesterone tends to be more calming or more stabilizing for the mast cells versus estrogen tends to be more inflaming or more trigger some to the mast cells, which is why some people really have challenges that can start around the time of puberty or noticing challenges at different points in the ovulation cycle. And a kind of a double-edged sword though with regards to progesterone is because it calms the mast cells, but it's normal, physiologic, or healthy role is to try to also make things relax a little bit more, which is why it's higher in pregnancy to help to stabilize the pregnancy, to manage a lot of the functions normally with a natural routine, typical pregnancy.
But its role also helps to allow the pelvis to relax a little bit, to accommodate a growing uterus, which for patients with hypermobility or connective tissue disease, can sometimes make them have more challenges with the pelvis, the hips, the joints in general because of the hormone making things more lax.
So that's where it can be a little bit of a double-edged sword. And then the mast cells that respond to stress of any kind, physical or emotional stress, either one, they're being calmed by the progesterone, but then they're trying to respond to the physical stress such as their SI joints or their pubic bones being more unstable.
So then it's kind of like almost, it just negates itself or evens out. So you don't really get the full calming effect necessarily in everyone. But that's also why many ones with hypermobility or EDS or just connective tissue disease in general, when their pregnant might end up needing a pregnancy belt or SI belt a lot earlier in pregnancy than someone who doesn't have the hypermobility.
Because when they're starting out with things that are already more stretchy or have an increased laxity compared to the general population, and then you add the hormone that works to relax things further, it just makes it that much more.
[00:37:58] Jill Brook: Okay, so as a pretty naive, stupid person, I've never been pregnant, so I don't know about these things You're talking about like a...
[00:38:05] Dr. Shanda Dorff: I would not call you naive or stupid, just fyi. So what it is, is it's a a supportive type of brace and it, from a medical standpoint, considered durable medical equipment. So sometimes it's covered by insurance, same as like a cane or like splints or other braces would be. But it's a thicker type of fabric with Velcro that goes across the ends to be able to secure it, which is how it's adjusted when you can get it on and off, but you put it around your pelvis to design, to overlap the SI belt the SI joints in general, if you can kind of imagine where the ovaries are located in the pelvis.
So they're not as far over as your actual hip bones, but they're not right in the middle either. They're kind of up into the side from where the bladder would be. That's where if you go kind of deeper, farther back than that is where that SI joint is where the tailbone meets with the bones of the hip.
And so the sacroiliac is what the SI is. So the sacrum is the tailbone. It's just not all the way to the very back, cuz that's like the muscles of the buttock and the skin. And so it's kind of more in that middle range. And so then you're putting this like fabric, Velcro adjustable belt over that joint just to provide added external support and stability.
Some will put it on the outside of their clothes. Some might choose to put it like on the outside of their undergarments, but like inside their like pants or skirt or whatever outer clothing they're having. And it doesn't really matter as much, as long as it's able to be functional and comfortable for the patient.
And in a way the patient is okay with, because we would never want the patient to have to feel like either overly self-conscious or anything else because we just want them to be able to be enjoying their life, to be getting to do the things they want and need to do in a way that works for them. And there's no absolute right or absolute wrong and each person is unique and different.
That's why each one needs their own individualized custom plan to orient themselves. But this is a way that can help provide additional support for them. A way that people can also wonder if their SI joined is out of place through wondering is. And a lot of times it's helpful to have someone next to them or someone else in the room, but if not, they can try to slide their feet next to like a footboard or to a wall, but lay down on your back and then just put your legs straight out front in front of you.
And provided you're not someone who normally, always lifelong had one leg longer than the other, if your legs were normally would end at the same time when you're laying down with your feet out in front of you, when your SI joint is outta place or subluxed, you suddenly now have one leg longer than the other.
that's when you then have to be able to maneuver, pop to get it back into the proper position. And then it corrects the leg length discrepancy. If the person chronically or lifelong has had a leg length discrepancy, but all of a sudden it's more or less than what it was before, than either the SI joint is now out of place and it wasn't before or maybe it was out of place more before than it is now, which is why it's actually closer in alignment than it had been. Or potentially the one that was longer. That side is now out pushing things the other way.
[00:41:08] Jill Brook: Wow. Interesting. Okay, so what I'm hearing you say is that during the pregnancy and everything else, there are answers that you just have to be maybe a little more careful about which drugs you choose to use. There's some of these physical brace supports that can help. And then just having somebody who's knowledgeable probably goes a long way because probably so much is going on and changing with your body that having a mast cell aware physician just helps you figure out what's mast cells and what's just other things.
[00:41:41] Dr. Shanda Dorff: Oh, absolutely. And I actually have had several patients where their obstetricians, or even their they used to call 'em perinatologists. Now the term is maternal fetal medicine specialist, which is a fancy way of saying a high risk obstetricians have referred their patients specifically to me just to try to help just with the mast cell disease during pregnancy.
But there are other clinicians, the ones managing the pregnancies, like I used to do prenatal cares and deliveries and stuff. But again, just to try to make sure that able to be available for my other patients as well as like, you know, the kids' schedules and things like that. I don't do the deliveries anymore, but I used to, and I know I've worked with so many and helped kind of co-manage where I'm just taking care of the mast cell parts and their prenatal providers and sometimes it could even be their midwives and stuff are working together with it that we just create a team to be able to kind of, you know, I hate to use a sports analogy given the fact that high impact sports are really tough with connective tissue disease patients, but it's almost like a divide and conquer type of thing to be able to separate out the different aspects of the individual patient's needs to be able to get all of them addressed at the same time. To be able to then have the best overall outcomes for the individual and the the baby or babies. Cuz sometimes there's multiple babies.
[00:42:54] Jill Brook: And do you mind just giving us, maybe just like a two second answer. How concerned do mast cell patients need to be about being pregnant and giving birth?
[00:43:05] Dr. Shanda Dorff: When it's the only issue is just their mast cells and so they're not having other problems all cuz there's definitely some issues that are really dangerous, unrelated to the mast cells that can make someone very, very high risk. They are considered a high risk pregnancy, but nowhere near the most high risk whatsoever.
Basically, in the US, pretty much anytime someone needs a medication during pregnancy or if they, even if they just have obesity, but no actual health problems from it, if they are someone that basically has any chronic conditions, the US categorizes them as a high risk, but there's multiple different tier levels, and so they are just high enough that they're needing additional monitoring.
They may need medication adjustments, but it's does not mean that they would have any potential huge red flags for the pregnancy just because they have mast cells, or for that matter, POTS or EDS. Those would all be in the same category. Just need closer monitoring and management if and when a problem arises, but not a big red flag.
[00:44:02] Jill Brook: Oh good. Okay. So we can put listeners' minds at ease a little bit on that, and we can move on to a next cool topic, which is, I guess your right brain. You are a writer and a very prolific one because just in the last few months you have had poetry at amazon.com, you have a new novel out and you have a symptom journal specifically designed for complex patients. Right? But I'm excited to hear about this side of your life and your brain and I don't know, where should we start? I guess, should we start with the symptom journal, because that's still medical?
[00:44:42] Dr. Shanda Dorff: Sure. Absolutely. Yeah, it's called My Body, My Day, and it is one that's specifically designed to be able to help patients with complex multi-system diseases, to have ways to be able to kind of track and monitor with specific key metrics that are followed from a clinician or medical standpoint.
Matter of fact, in the state that I am in, a lot of them are ones that are actually from the regular typical insurance model system standpoint are actually monitored at the state levels with different like surveys, questionnaires, things like these same types of topics, which can hopefully be able to see how the individual is doing outside of the clinic, but also to help improve the efficiency of the rooming time because the questions are already answered.
So they can spend more time directly with their clinicians and if the patient is having a particularly challenging day, they can just take a picture of that particular journal that day to then upload it to their patient portal to then be able to see is this something that we can piece together quickly versus something we're needing to follow up with.
And they can be as detailed or as not detailed as they want. The book itself, it actually has two pages per day. And so it's like, you know, when you open up, it has like the left side of the page is, you know, part one of that day. And then the right side is part two where it's got different things where they can just circle to make it simpler, easier.
It also has a few sections where they can just write things out, whether it be something that they had to avoid. Anything new or different or change that day when they're trying to figure out what could have been triggers or challenges or problems, things like that. All the diagrams, even all the different like motivational quotes and stuff for each month are all ones that I created and did myself, but it's designed to be able to really be the patient's unique story.
And so no two people's journals will actually end up being the same because it actually is displaying what their multisystem disease is resulting in their daily lives. And so that's the main reason I wanted to be able to have this out there was to be able to really better see how individuals are doing outside of the clinic, outside of the the doctor's office, because while it's great to see them there, I also know brain fog can play a role too with some of these conditions.
And sometimes it can be tough to remember all of the little details, and that's why it's right there. Or if you've been able to send it periodically to your clinicians, it makes it that much simpler and easier to just have it available.
[00:47:16] Jill Brook: That's so smart and that's so great to have a symptom journal created by the physician because I think a lot of patients are always wondering, well, what does the physician care about? I know what symptoms are more important or less important to me, but that doesn't necessarily tell you what is most helpful to a physician. So that's awesome. That's amazing. But now you also have written poetry and a novel. Talk to us about those.
[00:47:45] Dr. Shanda Dorff: So I first started actually writing poetry in elementary school, but I wasn't published the first time until I was in high school. And that was actually the recommendation of one of my creative writing teachers. And it really surprised me that she suggested I submitted for publication because I didn't think that was even possible.
And it was just like, you know, hey, I'm just an average person, but then I'm having this English instructor who has done all types of literature and stuff her entire life suggesting it was just kind of flattering, but also kind of scary. And surprisingly, it was published and I included that in the Water Fallen second edition, which is that poetry anthology that was released at the beginning of April.
And that particular poem was called size one Jeans. And it was about a girl that I happened to see one day when just walking into a store. And it was just very disheartening what I saw versus my mind. Whenever I am thinking of something, as things pop in my head, I jot it down. So sometimes it comes out in the form of limericks, sometimes sonnets, sometimes rhyming, sometimes free verse, sometimes humorous, sometimes sad, sometimes soulful. Sometimes romantic. Sometimes it can be very, almost just like a empathy or grief type of release.
Very much, I am an empathic person, and so I can kind of like feel what they are feeling. And then for me, it helps it to be able to get it out when I just write about it. And I've had a few times where they actually wanted those particular poems to be included in the services for their loved ones.
One of 'em that I published several years ago that I included in that book was a sonnet that I wrote after talking to a classmate the evening his mom died and it was called August 23rd, 2002.
And it's suddenly my heart goes completely numb to you. There's only emptiness and pain. Some hear silence and others pounding drums. You felt such an awful and yielding strain from the depths of your soul. You want to scream. I can't fully imagine your horror. If only your nightmare were just a dream.
Your life and your world would not be poorer. Sadly, today, your precious mother died. She'll remain a guide and light in your world. Over time you may still hear the groans that she cried, agonizing pain had just unfurled. Her voice silenced off into the Black Knight, providing you with a greater insight.
And so when that one was first published in the book across the Abyss, I actually gave copies of it to both my friend and classmate as well as to his father. But I mean, like I said, that was 21 years ago. And so the Waterfall and second edition is a much greater expanded anthology that has some of the prior palms that I added to it, but also many more. There's even one called Bain Stay in Your Lane that has to do with some challenges in just typical medical processes to be able to get various different things approved and covered to be able to meet patient needs and stuff.
[00:50:34] Jill Brook: That's great. So you think that's how you process certain experiences by putting it into poetry?
[00:50:40] Dr. Shanda Dorff: Yeah. Yes. I do, and it's something that for me, kind of once I get it out, then it's gone and it makes it feel so much better. And so we're relieving and simple and very therapeutic. And for me it is something that I've always just really enjoyed and found as a, a good outlet.
[00:51:00] Jill Brook: You must have the most amazing time management skills.
[00:51:04] Dr. Shanda Dorff: It doesn't take me as long to write it as what people may necessarily think. Just because for me it comes out really fast.
And As an empath, it is something that, for me, the outlet is essential and needed, and it is very helpful. It is a lot of fun, and it also is a way that allows me to be able to share with others that could potentially help them too.
[00:51:28] Jill Brook: And I'm just excited that we have you on team complex illness because we could use some heavy duty brain power on this team. Now I know we only have a little bit of time left, and there's so much I wanna ask you about, but tell us a little bit about your novel, because that's seemingly a whole new and different thing that's that's a commitment.
[00:51:52] Dr. Shanda Dorff: So the novel itself is actually very atypical for me. I happen to remember a dream that I had one night and in the dream I was actually on the movie set where the store was being created into a film, but I have no experience doing screenplays, but I have a lot of experience doing poetry and short stories and things like that.
So I just wrote it out and it ended up coming out as a novel. And it's a historical fiction novel that spans almost a hundred years in five generations of a family where they are working to discover the truth of their family heritage that had literally been buried and was not known at all. And that's where the title, deep, when A Buried Chest Leads to The Quest of a Lifetime comes about.
The book itself works to encompass everything from differences in generations, finding oneself, differences geographically, socioeconomic status, religion, race, LGBTQ plus supporting each other, differences in political ideals. Even just different like politics, differences in all aspects of life, women's rights, civil rights, and it's a very fun, creative journey.
Matter of fact, I actually even just this evening had a patient send me a message that they had just finished reading the book and really enjoyed it, which was kind of sweet and I didn't realize that they had actually were even working on reading it. So that was really sweet and a lot of fun. But it's journeying with the character Andrew, who is a social anthropology graduate student in his discovery to learn the truth about his heritage and finding both love for what he always knew, but also love for the truth and a stronger bond and connection to the family members that he knew as well as ones he didn't know, just from learning more about them and getting to know them better.
[00:53:43] Jill Brook: Yeah, I am partway through it and I am so enjoying it. And I love the premise, the exciting moment where he finds the, the chest in the backyard.
And I just thank you for sharing it with us all and putting these things out into the world. Thank you for your ongoing work to help complex patients. And we're just so thrilled to have somebody like you on Team Complex patient, and we look forward to what else comes out because I have to laugh because your three latest publications came out faster than I can read them. And so I don't know what else you're gonna put out into the world, but I look forward...
[00:54:24] Dr. Shanda Dorff: the next one that's gonna be coming out in a few weeks is a book titled Talk About Sex. You know, earlier we talked about some of the case series and things like that, and this is one that's designed to be a just general empowering, informative book to try to provide information, make sure people know what the terms mean, to remove stigmas, remove any taboos, making sure that they know what to look out for, when to seek help.
Understanding that there isn't any absolute, you know, like rights to wrongs provided everything as consensual, things like that, but in a non-judgmental way to make sure that everyone is able to have basic information because unfortunately there's a lot of inaccurate information that's out there.
There's a lot of times where people either feel pressured, coerced, or their ideals are based on things either from like social media, like friends, things like that, or sometimes feel very shamed or stigmatized, or judged. Both professionally but also personally as a, you know, 40 something married woman with three children understand that I have patients who have at some point had sex in their life, or will at some point have sex in their life.
Not everyone has, not everyone will, but many have. And I have encountered many who have had complications or problems thereof. Sometimes even their hypermobility can cause issues. And that's where we can try to figure out by evaluating some of their most challenging areas, like, you know, which approaches are best if they're having knee pain or hip pain or pelvic pain and things like that.
Getting all this as a comprehensive resource to be useful and helpful for patients, but also for people as they're just trying to learn about their bodies.
[00:56:07] Jill Brook: Absolutely. Oh, well that sounds like it's gonna be so valuable and we really look forward to that. So thank you for your ongoing and amazing work.
[00:56:18] Dr. Shanda Dorff: And it's been a lot of fun and thank you for having me.
[00:56:20] Jill Brook: Okay, listeners, that's all for now. We hope you enjoyed this episode. We'll be back with more next week. In the meantime, thank you for listening. Remember, you're not alone, and please join us again soon.
