In this episode, we are joined by Kimether Redmon to discuss her 20-year long endo-diagnosis journey, how chronic illness has impacted her life, and as a health provider herself, what she's doing to improve the communication between doctor and patient.
Alright note takers, get ready! This is a beefy episode filled with accessible tips on preparing for and communicating in doctors appointments, from someone who is on the front line. Take a deep breath. Doing just one or two things can increase your chances of having a successful appointment.
Having a successful appointment can seem like an impossible task after years of dismissal and feeling let down, but here we are joined by Nurse Practitioner and chronic illness patient and advocate, Kimether Redmon.
When living with a chronic illness, it can be hard to take care of ourselves, let alone focus on taking care of others. After living through medical gaslighting and a delayed endometriosis diagnosis for 20 years, Kimether has continually shown up for her patients and is now trying to change the way our current medical system treats patients.
Kimether discusses how she was treated throughout her diagnosis journey, how a beloved career in healthcare forced her to put her own health on the back burner, a successful patient-provider dynamic, and how to navigate the current healthcare system in your favor. We love this episode so much because it includes a rounded perspective from someone who has the personal experience of medical bias and the professional experience of being a provider.
We applaud Kimether for these little acts that go a long way, and what she is doing to make a difference in the healthcare system by personalizing patients' experiences and effective communication.
Topics discussed:
*the effects of medical trauma and medical bias engrained in the healthcare system
*what is trauma-informed care?
*what does patient-centered care and trauma-informed care look like?
*why do some doctors gaslight?
*the benefits of informed decision-making between patient and care team
*couples navigating chronic illness together
*preparing for appointments ahead of time goes a long way
*tips on how to communicate detailed symptom experiences to minimize dismissal
+ much more!
Lastly, we end on a high note that comes from Australia. Come on, we’re going mushroom foraging! 🍄
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Show Notes:
Kimether Redmon on Instagram: @therebelliousuterus
Kimether's Podcast Endo Thick of It: https://podcasts.apple.com/us/podcast/endo-thick-of-it-with-brandon-and-kimether/id1683049709
Mushrooms can be detained to digest cigarette butts: www.cleanup.org.au/fungi-solutions
Carol: While it's no secret that female healthcare is broken, You may not realize how many providers are inside the system quietly and profoundly changing it. Today, you'll meet one of their very best. I'm Carol Johnson, and this is Hello Uterus.
Okay, so open notes on your phone or grab one of those things. Pens, I think they're called, and get ready for many masterclass from a family nurse practitioner living with endometriosis. This is going to be a beefy episode, and I encourage you to listen to the entire thing because she delivers. But first uterus in the news.
This isn't actually news to most. A significant majority of Americans do not support laws that would prohibit access to drugs used in medication abortions and confidence in the US Supreme Court is at a new low, according to a new poll released on Monday, April 24th. A majority of Americans also do not believe federal judges should be able to overturn the FDA's approval of a prescription jug.
The poll found, oh, gee, who would've thought that? Of course we don't. That's why they're the f d a. It's, it's a wild, wild world out there, isn't it? 64% of Americans also oppose a law that would ban access to medication abortion. We're so glad. To have that poll, and we know that that's the case.
And the Supreme Court did not pull Mifepristone from the shelves as many of us thought they might on Friday evening. let's hope that that remains the case, um, because this next little tidbit speaks to the importance of. Access to healthcare for females, including medications for abortion to also facilitate spontaneous abortion gone awry, otherwise, people will die.
A large Danish population study of almost 30,000 women diagnosed with endometriosis between 1977 and 2017 and matched with 300,000 controls. Has found an association with pregnancy loss and recurrent pregnancy loss, but also that the association strengthened with the increasing number of miscarriages, so the more miscarriages, the more likely miscarriage happen.
prefer to call it spontaneous abortion so that we're not placing blame on the pregnant person. People with endometriosis are not only less likely to get pregnant and more likely to experience pregnancy loss, but their chance of a spontaneous abortion also increases for each subsequent subsequent pregnancy.
What I love about Danish studies is that they look at large segments of the population because they have an amazing, repository of long-term patient data from their nationwide healthcare system. And this data is, um, Again, it's, it's probably not something that is, news to people living with endometriosis, but it's this data that actually, it's data like this, I should say, that actually helps get changes made.
and it, it helps, who are lobbying for funding and for, increased research to, to make that happen. And I. Specifically included it because having a spontaneous abortion is that it's not a guarantee that that process goes off without a hitch as we know, and it can result in the death of the pregnant person, which is all the more reason why we need to have access for.
Medications that are used to facilitate spontaneous abortions and, or to treat spontaneous abortions and to facilitate really anything. because we know so little about the female body and we have so few treatments available to females. We really can't afford to lose anything.
We need it all and we need more. And data like this. Is, is a way for us to get that funding and also to impress upon people who are not clinicians, impress upon them how debilitating and devastating these conditions are. And in the fact that early diagnosis with access to gold standard treatment is essential.
And funding research is the only humane thing to do. And by funding I don't mean double digit millions. I mean, Serious funding. We're talking hundreds of millions of dollars. And if you wanna catch up on all the years that we didn't get the funding, you can start pulling it into that B range into the billion dollar range.
We won't complain. I would also like to see more discussions happening outside of clinical environments. Around spontaneous abortions, what causes them, what happens when they happen, and let's get this information out to those who legislate so that they can also be educated on this very common condition that happens that is typically really easily treated, until you take away healthcare from females, then it becomes very difficult to treat.
And I'm sure like me, all of you don't wanna see people die. And hopefully all of them don't wanna see people die too. it should be a universal wish, maybe it is. And the more that we educate those who are not educated, the less misinformation flourishes and maybe the more productive we can be as a society, that would be awesome.
So I just wanna say that we have a giant. Interview episode for you, and we're gonna take a quick break. Like I said, open your notes application or get a pen and paper because you're going to want to jot down the golden nuggets of wisdom that Kimi Redman is delivering on this episode of Hello Uterus.
Carol: Kimether Redmond is a family nurse practitioner serving low income uninsured patients in her area. Before her nursing career, she was a research consultant with a background in brain injury research and workforce development.
Her professional goals are to increase provider awareness of healthcare inequity, become a leader in bridging the gap between research and clinical practice and underserved communities, and empower people to make well-informed health decisions for themselves and their families. Being diagnosed with stage four endometriosis in 2021 after over.
Hold on. For this 20 years of countless incidents of dismissal, gaslighting bias and incompetency has fueled her own diligence in becoming a healthcare provider and educator that prioritizes high quality trauma informed care for all outside of work as if she has any time. Kimether regularly volunteers for Endo Villa endometriosis support for Endo Black, and at her local church.
Kimether and her husband Brandon also started a podcast called Endo Thick of it for couples navigating chronic illness. I cannot encourage you enough to go check out this podcast. Having a husband and wife team to talk about how they've navigated it and provide opportunities for us all to learn from their experience is something that we desperately need for all people who live with chronic illness. Kimether is paving the path to equitable healthcare for those who most need it and deserve it. People of color. We are grateful to have time with her today on Hello Uterus. Kimer, welcome to the show.
Kimether: Thank you so much for having me. It's an absolute pleasure.
Carol: Uh, gosh. It is, our pleasure. just thinking about your goals, I can feel this entire massive cheerleading squad of people coming together because your goals are the things that we need so desperately today. So you're supported and we will make sure that more people find out about the work that you're doing and that you continue to be supported. So, so happy to have you here. So I wanna start with understanding a little bit about your experience as a patient living with endometriosis, and can we begin with where you were at in your healthcare career, when your symptoms either began or, did your symptoms begin before you decided to pursue a healthcare career?
Kimether: That's an excellent question. So my symptoms did actually start, just like for many people with endometriosis, pretty young. Uh, I had. Pretty painful periods that I thought were normal, but they were not, uh, since the age of 11. And I always was very interested in healthcare. I didn't know exactly what I wanted to do, whether I wanted to be a doctor or a veterinarian, anything.
Just, I, but I was always really fascinated with anatomy and physiology. And I just remember really wanting to dig and try and learn, like, why are my periods like this? Is this how it's supposed to be? but even with all my knowledge and my curiosity, I, I still normalized it for some time. Uh, even well into, my undergraduate, uh, I earned, public health, undergraduate and, and master's degree before going into research.
And even with that background, I still was like, I think this is just. how it's supposed to be. For me, it's cr it's really, uh, blows my mind. Just like how someone, even myself who's very, um, you know, research driven, who loves to learn, who was fascinated and pretty well versed with, you know, the human body still was able to gaslight myself even because of the amount of times I had been told by providers, family members, that this was just what life was supposed to be like.
Carol: Wow, there, there's so much to unpack in there. the idea and it's, it's not uncommon that healthcare professionals are living with chronic conditions that they themselves have normalized, which in a way kind of makes sense because within the medical profession, bad, heavy, painful periods have been normalized.
So, it's kind of wild because I personally would expect a different outcome. But that's bananas. Because on the other side, it makes perfect sense that if you're working in healthcare over time, your own awareness of your symptoms is being normalized just by exposure.
Kimether: Absolutely. And also working in healthcare, especially in a nursing, profession because, I transitioned from public health research to nursing, and it only. Was even worse when I got into nursing because not only was it normalized your own personal health pretty much is put on the back burner.
the expectation as a healthcare provider, at least as a nurse, is patient first. Uh, a lot of nurses are almost programmed to believe that the hospital will fall apart if they don't come to work.
Carol: Right,
Kimether: Um, because there's a little truth in there, but it becomes, like . Individual responsibility. That's where I think it becomes a little, toxic. So I put my health even more on the back burner once I became a nurse and really made my life's priority was my patients.
So even if my patients are dealing with pain, there probably was comparable pain that I was dealing with. You know, some days of the month I would do everything possible to still be able to show up for my patients and and manage their symptoms, manage their pain, but not do those things for myself really well.
Carol: Right. Well, it's programming and it's also, by design to put, so much burden on the nurse's shoulders that you're right. If they didn't show up, would get done? I mean, the it's just such a precarious situation. So you were diagnosed in 2021.
Kimether: hmm, let's see. Goodness. So yeah, I was about 30, I guess I was 39, at that point. So from 11. To 39.
Carol: Right.
Kimether: I just had worsening symptoms, but what really, tipped me over, unfortunately, was while I was working as a nurse, I was also in grad school to become a nurse practitioner, and my symptoms started to go from being just really severe periods that didn't quite make sense, but it was just, you know, a few days of the month to becoming more and more days of the month.
I recall around twenty seventeen, twenty eighteen that my pain and, this just overall fatigue and just being Almost debilitated. the number of days that I was debilitated out of the month started to, to add on. If, if it started out with just being the first couple days of my period, then it was three days of my period, four days, five, until it was my entire period, which at the time was eight days long.
That's a, that's a very significant chunk of time out of the month.
Carol: Absolutely.
and that, that in and of itself is what is regularly blown off. Right? Just, oh, that's just your period. Oh, you
Kimether: It's just your period. Yeah. And started, bringing these things back up to my healthcare providers cause of, cuz after a while I stopped bringing it up, in my twenties, but in my thirties started bringing it up again, saying, man, my, periods are becoming pretty unmanageable.
And even as early as my, early to mid thirties, I was told. Oh, it's likely just fibroids. and I did have fibroids, but at the time, they weren't sizable enough to convince me that they were the culprit of all of my symptoms. but then I was also told, well, this is also normal too.
periods should be painful. And, black women tend to have even more painful periods, and, which I don't know where, what research they were citing there, but I would hear that, a lot.
Carol: it's like, no, wait a second. Let, let's just change that around. Black women are disproportionately impacted by fibroids, so yes, doctor,
Kimether: So, yeah.
Carol: black people do have periods that can be more painful with heavier bleeding, but it's, it's not because they are black females, it's because there's an undiagnosed condition at play here.
Can we focus on that?
Kimether: Exactly. Exactly. And I remember when I finally flat out asked like, what, what else can you offer me besides copious amounts of NSAIDs? I was, I was just started getting kind of fed up and, and I was told, well, you could have a hysterectomy., and I was like, are you serious?
don't you think that, um, escalated pretty quickly? we're really going straight to hysterectomy,
Carol: whoa, organ removal. I mean, are you kidding? the number one reason for hysterectomies is due to fibroids,
Kimether: Mm-hmm. but again, my fibroids at that point, weren't massive. at that point, they weren't in impeding, fertility.
I mean, I think my mother had one like the size of a grapefruit. they were nowhere near that significant, but they were easy to blame, for all of my, symptoms, so.
Carol: And then to say it like just fibroid, it's, it's like, gosh, we've actually, we've actually normalized whole conditions now. I mean, like whole chronic conditions that are abnormal. We've just flipped the table on them because they primarily impact female bodies and now they're called normal. That's bonkers. I wanted to ask you, you mentioned something, uh, you said that you stopped going to the doctor in your twenties. Can you tell me about what, what made you make that move?
Kimether: So I always found, going to the doctor to be stressful and the anxiety provoking. I definitely had a lot of distrust, my first like, well, woman visit was pretty traumatizing and it made me really hesitant to do anything that would require pelvic exams or anything else that was invasive.
And, you know, I still would do my. Due diligence of doing my PS and just bearing the discomfort of them. But after a while, I got tired of just being given, NSAIDs like ibuprofen and the prin. It would just alternate between the two when I would tell 'em how painful my periods were. And I started to, to really just question the intelligence.
I, I mean, I hate to say it, but just like this, the intelligence of, of a lot of the providers that I was seeing, because I think it was just too easy for for them to just say, oh, just here's more pain medicine without anyone even asking, how long have you been using these high dose like NSAIDs? Like my, my GI is, a hot mess now because of long-term use of high dose, anti-inflammatory medications.
And so by the time I got to maybe my mid. To late twenties. I just tried to interact with the healthcare industry as little as possible. I mean, bare minimum while working and in it.
Carol: Yeah. I mean, that, that is, it's such a, service for you to talk about this, so thank you. Because so many people take themselves off the care pathway for exactly this reason, and, it, it is not uncommon, but I don't hear people put it into words and talk about it publicly that often. That they have basically made the choice at a particular point in time to take themselves off the care path and say, screw it.
Kimether: Yep. And be like, I'm better off without,
Carol: Right.
Kimether: which is so unfortunate because there's a reason why we should have a care team. There's a, we should have general practitioners and ob GYNs that we can lean on to help coordinate our care. Cuz at any point in time, not only would we need preventive care, but things can come up and we need someone who can provide that continuity over time.
And I never was able to develop that continuity. I never, I think I never stayed with a, with A O G Y N longer than two years before I, they pissed me off and I. write 'em off.
Carol: Right. Yeah. And ha having to go from doctor to doctor and begin that process all over again and, and taking the time off from work and getting yourself there in transportation and all of that. it's such a waste of everyone's valuable energy time and energy and resources. it, it elongates the time from symptom onset to intervention, which then leaves somebody with getting diagnosed at stage four endo when they had symptoms as young as 11 years old.
Kimether: Mm-hmm.
Carol: would you describe to me what trauma informed healthcare looks like?
Kimether: I love the individualized this, cuz I know there's really great, big picture definitions of trauma-informed care, but I have to. Make that real for me and, and how best to apply with my patients. So for, for me, it means taking the time to realize that one, this isn't just another patient in front of me.
This is, a person, a human, someone who is coming to me, as someone who has likely been through a just unsaid number of experiences that have shaped perhaps how they are now, um, interacting with the healthcare industry. And I find it, for me, my responsibility to keep that in mind to, at the best level possible, to not add to the trauma that they have already experienced.
Now there's definitely some great formal definitions out there too that I can direct people to. But I really I challenge providers to really personalize it to what it is that their patients need in order for them to not do harm. and to be able to provide care that is equitable, that is, gonna provide dignity, you know, it's going to honor, honor them as a human, as a person, as someone of value.
but that also is shaped, by what the needs of that patient is too. So a lot of times when we use the, the more broad definition of trauma informed care, we tend to put trauma in a box. But at this point I've seen patients with so many different, Types of experiences that have contributed to their own form of complex P T S D, even just related to how they've interacted with the medical system?
I can, I personally can relate to that for sure. So I try to simplify it for providers and say, look, yes, this is what trauma-informed care means, but at the end of the day, it primarily is means that we are human and the person in front of you is also human and they have a rich background and experiences that has shaped them to who they are today.
What can you do to not add any added trauma to them? And what can you do to help them make the best, well-informed decisions for themselves and their families?
Carol: so essential and that that is a great way to look at it for a care team. That is overburdened in our environment today to say, Hey, this, this isn't some, McKinsey level process that you have to go through, with, 16 different points that you need to meet to establish some sort of care rating threshold.
It's like, no, just don't, don't cause more trauma.
Kimether: Yeah,
Carol: be,
Kimether: absolutely. And it also is getting to know the patient, and I realize that our healthcare system really doesn't allow for this very well. So that's why I'm so impressed by providers who have kind of found their way to do this, healthcare system is not very flexible, uh, because trauma informed care really means.
Getting to know what's, what has that patient been through? Tell me what's happened to you. What has your interactions with other providers been like? how does your mind, body, and spirit respond when you are in environments like this and this medical environment, is this part, it humanizes the situation.
And I, I hate that we have to be intentional about humanizing, the patient provider dynamic, but unfortunately we, we do because not only flawed healthcare system, but flawed society as it relates to this dynamic.
But that we have to be really intentional about ensuring that we see the human in each other, the, to me, the quickest way really to do that is to acknowledge that likely harm has been done in some capacity, regardless of that person's background.
and getting to know them well enough that you can ensure that you don't add more harm.
Carol: So important in, our interviews with patients and in our market research with the Uterine Kind app, it seems that there are still people who believe that the level of gaslighting bias, dismissal of symptoms, in fact, some people have actually said gaslighting is too strong of a, a word to use for what happens in, a, healthcare appointment.
So that's kind of frustrating to me along with the fact that I think I must be impatient at heart because I've heard about and experienced gaslighting. And so my assumption is once someone raises that, that that exists, that a whole group of people are gonna band together to get rid of that.
And that has not happened. I am routinely reminded of, how difficult it is to create change. But when you hear people say gas lighting's too strong of a word for what's going on, reflecting on your own experience and also from a professional perspective, how do you feel about that? How do you feel hearing that?
Kimether: Well, I, I I can't align myself with that cuz I, I actually do think that gaslighting is quite fitting of a term for what I've experienced and what I know many others have. I think that people perhaps are considering it maybe too strong of a word now because the word is now being used in so many other contexts as well.
Well, outside of the, you know, healthcare realm. and, you know, when, whenever our society gives a term that becomes too big for its own good, uh, it becomes just, just that too big to
Carol: Right.
Kimether: almost. Yeah. Like, like almost like cancel culture and, and oth other buzzwords. but at the root of it is quite fitting.
Medical gaslighting is whether it's intentional or unintentional. is. Unfortunately happening quite regularly. And I, I think what helps facilitate this dysfunction is, a lot of times our us as healthcare providers, one, we have time restraint. That's already a challenge. two, we, can sometimes start to get lazy within our practice.
And we start to think that every disease disorder has a certain look, a certain patient profile so that when we get people who don't fit those profiles, we just say, oh no, you can't possibly have that. now we're not believing the patient. we've gotten off track of actually just getting the patient's history and ensuring that we have a good history so that we have all the information necessary to, to come up with what are we think are their, our differential like diagnoses might be.
but then even patients that don't know the term gaslighting, like for example, a lot of my patients are, recent immigrants, who I've never heard that term before, but when they described what it is that they've experienced when interacting with the healthcare system, it fits that definition.
and when they describe what they experienced when they came to the states the interaction that they're having fits that definition. So I have to believe the patient then That's another thing too, is that I'm always gonna default to believing the patient. You know, like, so if patients are telling me that's what they're experiencing, I will not, try to say otherwise.
Carol: That seems to be a really wise strategy because we talk about this on the show here a lot, and I'm sure you're aware that students in med school are taught that 90% of a diagnosis comes from the patient's symptom story. So if you are, yeah, if you're telling that patient that what they're telling you is not accurate, and then we look at the long list of conditions that remain undiagnosed for years.
It doesn't take a PhD to figure out what's going on.
Kimether: Absolutely Right. That's exactly what I try to emphasize to my colleagues, but especially medical students, nursing students that, The history is everything. You, the patient will tell you what's going on with them. They'll diagnose themselves unknowingly if you collect a good history and that you ensure that that patient knows that the information that they're giving to you is being well received.
That's why I'm, I want us to make sure that we're learning about our non-verbal communication and, and making sure we're not providing weird faces and are dismissively going, looking at our laptop, not looking at the patient while they're pouring their heart out to us. You know, wanna ensure that they, feel that this is a space to openly share how they're feeling, because it can be hard to describe somebody's non-specific symptoms.
but it's our job to help them with that. I provide people with descriptors. I, try to tell 'em what, describe it in your own words, and I will then tell you how I interpret that. And you tell me if I, how far I am from it, am I hitting the marker or not? You
Carol: Okay. We just had a masterclass that was a masterclass in how to facilitate a patient symptom story.
Kimether: absolutely. And regardless of their literacy level. I mean, I've done it with patients of all kinds of backgrounds. They're all capable of telling you what they're going through, even if they struggle to make sense of it. That still is meaningful too. Include in my history that the symptoms are erratic, unexpected, and seem to be intermittent and, can happen at any time of day like that.
That's helpful information to know. even when they give me non-specific symptoms. That's helpful. Cuz as you know, there's some disorders that almost completely is characterized by non-specific symptoms like fatigue and difficulty sleeping. Like it's up to us to become good diagnosticians.
Like diagnosticians. Is that a word? Diagnostician. Diagnosticians.
Carol: diagnostic.
Kimether: Maybe. Maybe, maybe Angel could help us with
Carol: oh, you know, you know, I, we basically look at it as, as your care team, they are the detectives and you, you are the eyewitness. And I've never heard of a detective interrupting an eyewitness telling them that they didn't see what they thought they saw or sending them out of, the interrogation room before they feel like they've told their full story.
So we, we can look to a detective and say, that's a good way to look at it. But, so , to people who are listening, who are, living with symptoms, Taking what Kimether is saying here what she has pointed out is that it's in the details and the nuance of the story that you're sharing.
You don't have to, rehearse this or like try to find the perfect word. It's so important to express how you're feeling. But if you are not in front of her and you're in front of someone else who isn't allowing you to express that, first of all, we're sorry. And second of all, Kimether, how can we help them in that situation where they're not sitting across from you, they're sitting across from someone that you have had a similar experience with.
Right? That you know someone who is going to hear those, symptoms like fatigue and suggest getting more sleep, which is kinda like, are you, oh
Kimether: It was so frustrating, so frustrating.
Carol: Right. Get more sleep, eat
Kimether: just, you just need more sleep. Lose some weight, you know,
Carol: Yeah. Yeah.
Kimether: Ugh. So even though I, don't want everyone to feel like they have to almost write a dissertation before they come into their visits. Like, I, that is just so overwhelming to me. It can sometimes add to the anxiety, there is something to, some level of preparation doesn't have to be super formalized.
It can be, Describing what you're going through, putting it on paper, even if it's just to help you understand it better and to make sure that you're, giving it good thought because we do need all the details, or at least as many details as possible to be able to, to help.
And if appointments tend to make you flustered or if you're dealing with a lot of pain, so you never know when that pain is gonna flare up and can start making it difficult to focus in the appointment, then it is good to do some preparation, have some information written down. for example, if you have those non-specific symptoms like fatigue, as much as you can categorize it, the better. So for example, when I ask somebody about fatigue, most people won't, don't even say the word fatigue. Like they, their like just tired when, and then they get providers that say, oh, well just get some
Carol: Who isn't
Kimether: Yeah, everyone's, everyone's tired. I tell 'em, if after a full night of sleep you're waking up and you are still exhausted, that's fatigue. If activities that used to not exhaust you is now exhausting you, that's fatigue. So sometimes it means providing the provider with examples like I'm dealing with fatigue that is relentless even when I'm getting my full eight hours of sleep at night.
I used to be able to run five miles. Now I can barely walk my dog around the block. Like those, descriptors help paint a picture for the provider to realize the impact on your life that this is having, the change that it's having on your life versus it just being, just a, a spell of feeling tired for whatever reason.
and then I also, I tell patience about old cart only because, That's how your provider is thinking. So I think patients should too Old card is an acronym, that stands for onset. So that's when did the symptoms start? Location. So if it's like pain, for example, being able to describe where you're having the, that pain, duration.
So like how long does it last? Like when you have, pain with urination, how long does that pain last? Does it last for 20 minutes after you've urinated? or does it only last until you finally urinate or those type of descriptors. And C is like characteristics. So like is it burning? is it a cramping pain?
Is it, does it feel like menstrual period pain? and I know that most providers may not be nice enough to provide you with all these. Words to describe what you're going through, but thankfully, there are sources online that have done a good job of finding these types of words to help people be like, you know what?
Yeah. That actually, that it is a, an electric type feeling, feels like I'm being zapped or something like, yes. You know, have that information. so a, uh, so I like to make sure that, people will tell me like, is there anything that aggravates the symptoms? if you're dealing with fatigue, is it worsened when you, You know, my bowel movements cuz this, that is actually a, a lot of people's reality.
Like after I go to the bathroom, the, my fatigue is just so much worse that I have to lay down, the fatigue is worsened by, just doing, you know, 15 minutes of house cleaning and then I have to lay down, and then r will be relieving factors. Is there anything that actually helps, that's my favorite one personally, because Who wants to go to a healthcare provider just for them to say, I know exactly what you need. And they tell you something that you've already tried multiple times. Like, so, so I, I'll say, so let them know what have you done already? what have you tried and was it helpful or not? Was it only partially helpful, or was it like not helpful at all?
And then tea can be a couple different things. but, a lot of times I, I'll stick with time. cuz sometimes I can get messed up with like duration. But time is another, is another way to, to really be able to describe like, This tends to happen at this time of day, that can give us a lot of information.
once people can tell me that, and again, you should not have to feel like you have to have all of these answers, but it at least gives us a framework to work with so that even if the night before the appointment you're like, all right, let me just make sure that I have some language around describing what I'm going through, because at the end of the day, I'm dealing with a provider who has 15 minutes and likely will not have the time or desire to help pull this information out of me.
So what can I do ahead of time,
Carol: such great information. You're right when you begin an appointment and you know the clock is ticking. And you try to tell what you think is a good expression of your symptoms. I think we put ourselves in a position, we proactively put ourselves in a position where we're, we may experience having those symptoms dismissed because if we go in and we say, my periods are really bad, I'm just gonna let you know, that's not gonna get you the diagnosis that you
Kimether: get you far. Mm-hmm. Unfortunately,
Carol: yeah, I mean that, it's really unfortunate to say that because you're right. It should, and yet it almost is like the nail in the coffin because It immediately switches that provider's mindset to, okay, so we'll, I'll offer birth control pills.
And if they're not open for that, then they're just gonna have to ride it out until they get pregnant. Or they want a hysterectomy,
Kimether: Mm-hmm.
Carol: you know, because that's what we do, right? We, we bleed, we birth, and then we get the organ removed.
So that, that's really, really great information. you have to know that in advance.
You have to be thinking about this while you're living with your symptoms. And, I think it's really helpful for patients themselves to begin this process of connecting the dots, because there is a feeling that happens that feels like progress. you don't feel like you're sort of in limbo or kind of floating in this space of, continuous questions and, and also, By connecting the dots, you take the pressure off of yourself.
you, you may no longer be saying, I'm broken, I'm not worthy. I must be the one who's at fault. Here. You start to build a different kind of relationship with your female system. That is sort of like, if you owned a really, valuable high-tech device, you will develop over time, a knowledge base to care for that device because it's very valuable and it's very high tech and that is the human body.
Kimether: That is us. Yes. No, absolutely. And we deserve that. we need that attention and that care, this is the body that we have. And I am a big believer that no one should know your body better than yourself. you don't have to be, uh, a medical professional to be able to take care of your body and be able to provide it what it needs.
You just have to be familiar with it and be able to, articulate its needs or what's going on, what I really like to help people wrap their heads around is, yes, you're gonna have a provider who likely won't have time to, figure everything out for you, but. When you do a little bit of work ahead of time, your, I feel like your BS meter is a little stronger and more
Carol: more finely tuned. Yeah, a little more
Kimether: yeah. Uh,
Carol: Oh, yeah.
Kimether: yeah. Cuz you hit the nail on the head that that feeling of being in limbo or just being completely at the will of that provider is, is unacceptable. We are partners in our care. Like that doc, that doctor, that clinician, that pt, they should be partnering with you.
So that means that we can't put the complete onus on them. But, and vice versa, the, the provider should not be putting the complete onus on the patient either to figure out what's wrong with them and to fix it. But through that partnership, the provider should really be able to say, okay, here are my thoughts so far.
here are a few things that this, that could be contributing to this. What do you think might be going on? I love asking people that cuz because a lot of times people have done a little research and they're like, well, I'm concerned that it's this, this or this, or, you know, my mom dealt with this, so I wonder if it might be that, that is so, so helpful.
but if people are afraid to step on the provider's toes, they won't share what they think might be going on and, just leave it all up to the provider. But we need them to be our partner, which means that we have to provide the information necessary for them to be able to make, those recommendations for us, to make those well-informed decisions.
Carol: Yeah, everybody has to be at the table. And sharing in this process. Everybody needs to get better at this. patients need to take ownership over their physical experience and being really aware of what's going on because just the skipping over a particular symptom, or not connecting that symptom to, to a reproductive issue or an endocrine issue, that can change the trajectory of your consultation.
And so, whereas you could have been getting closer to a definitive diagnosis, now you're off on some other path because lack of preparation. And I don't mean that in like a. Shame on you. You weren't prepared kind of way because I don't think the patients understand what a critical role they play in this process.
Kimether: And we're not taught that either. We're, we're kind of taught that the doctor has all the answers and, you know, we just leave it up to them. So it really is a culture shift to say, oh, I need to make sure I'm doing my part here. knowing that it, there's a lot of challenges both for the patient to do, to do their part.
And there's challenges, of course, for the provider as well. Like, I, I remember during some of my most painful seasons it was so hard to just stay focused in an appointment. let alone Ashley absorb what I'm hearing and ask questions like I had to prepare ahead of time that I had no, I really had no choice because I would often disassociate, like once I got into the, the appointment, especially if I'm in so much pain.
And of course pain has a way of, only being worse when you're also anxious.
Carol: Right.
Kimether: so, this is what I was able to do before my visit. I was able to take a, um, a page outta my journal and just quickly write down the objective of that appointment, what I wish to get accomplished for that appointment, and here's what I'm going through that I need, I, I'd really appreciate their expert opinion on, if that's all I can do before an appointment, that's a win.
Carol: That's a win. Absolutely. Because sometimes I feel like we meet an appointment you know, in a lot of cases you've had to wait weeks for this appointment.
Um, you're bringing in past traumas with care. you very well may be going through. Issues at home because of your condition issues at work, because it, it is absolutely overwhelming. And so if you go in and, punt the football, it's okay. We were talking before we hit record, about the importance of, of not kicking your own ass.
Kimether: Mm-hmm. Mm-hmm. Exactly.
Carol: Yeah. It's it's just really important. And there's, support networks now that didn't exist before that, that are available to you to help you so that, if you don't nail an appointment, it doesn't mean that you, that nothing can happen between that appointment and the next appointment.
That's five months down the road. There are things that can be done.
yeah.
Kimether: I, I mean, I've had appointments where I just hit a wall and had to say, you know, I'm gonna have to stop here, or I'm gonna have to defer the physical exam for another time. I don't apologize for that, at all. I just listen to my body and, and say, this is, I've kind of reached all that I can probably deal with today and still have the energy to get through the rest of the day.
That's okay.
Carol: That's boundaries.
Kimether: as, as setting a boundary, not overdoing it, not, You know, opening ourselves to then regretting, and believe me, I've, I've had many appointments with many regrets before I finally started setting some clear boundaries, because at the, at, at the end of the day, that part is my responsibility.
I have to protect my energy, my health, and I shouldn't do anything that I think is going to jeopardize that. you know, I've had, visits that it flared up my pain for weeks on end because it was just, Too much in such a short period of time. now I, I have a, a better idea of just like how much I can, I can handle, but that's another motivator for preparing a little bit if you can, because the more prepared I am usually the more I can get out of the appointment within a short period of time. if before the visit, I've already, sent them copies of my, my last M r i, a copy of my physical therapist's latest progress note, you know, any other helpful information that they might need.
I, I, at this point have a typed up. History of present illness that I will try to, patient message to the provider bef ahead of the appointment so that if they have the time, like if they do any prep before their visits, they can look that over and already walk into the appointment with a general idea of what we're gonna be talking about today.
Carol: that changes the dynamic, right? Instead of coming in like, healthcare team high on the summit of healthcare Landia, can you please gaze down upon me and, and, you know, diagnose me, right? Like, that's just not gonna happen. and so then you, you change the dynamic, which is refreshing.
you know, think about the practitioner, right? Appointment number 20 that day. even though people in their practice are living with a multitude of conditions, the symptoms can all sound the same. So you, you kind of need to shake 'em up a little bit
Kimether: Mm-hmm.
Carol: and you get good results from that.
Kimether: I do. I, I honestly have been able to, navigate, you know, multiple appointments in this way, and it's taken a while to, Create this, you know? But now it's like a, fairly willed machine. where I feel like ultimately the providers are thankful, cuz I've done a lot of the work for them already.
Carol: dream patient.
Kimether: I just make, that's, I do get that. but, you know, if I can only recall one visit that I felt like that wasn't well received.
And of course that happens you know, this was a urologist that was, Towards the end of the day. So I'm sure he was already kind of at his, at his limit here. and I gave him some things ahead of time, not too much, nothing overwhelming.
Just here's a couple paragraphs of what I've been dealing with. Here's, some imaging. And I sit down with him and he interrupted me, like every third word as I'm trying to say. Okay, let me reiterate while I'm here cuz he didn't look at my email, my message.
and that's fine if you didn't have time to, that's okay. But don't sit here and interrupt me every third word, you know. but you know, some providers have a very, very, um, overly systematic way that they gather information.
Carol: You're being really kind right now. I'm
Kimether: Oh,
Carol: I gotta jump in. Is that, is that why you pause for Yeah, because I'm like that, that's just so
Kimether: cause it's bs.
We're, we're not robots. You're not typing in the question into a computer and, and, and spinning out an answer. We are humans. though, I can appreciate having a systematic approach to your diagnosis, you know, process. You can't eliminate the fact that you, this is a human being that you're talking to, they're going to need to tell this story in the way that, that works best for them too. And then it's your job. That's why you get paid the big bucks to fit it into your, system.
Carol: right. Put on your detective hat.
Kimether: exactly.
Carol: Like, I, I think it's completely fine that if, if someone interrupts you while you're trying to express your symptoms or the experience, the things that you've done to date, to address your issue, if they interrupt you, you can say, now, doctor, didn't you learn in medical school that 90% of the diagnosis comes from the patient's symptom story?
How are we gonna get there if you don't, let me finish what
Kimether: you don't, lemme finish what I'm saying. Yeah, yeah. it does, yeah, it does depend. And in that case, I, I asked him, I was like, it looks like you, you have a very systematic way that you want to get this information. I want you to ask me more pointed questions so I can give you more pointed answers because So cuz don't ask me the big old, when did this all start? And then interrupt me every third word because you're trying to get the information in a certain way. No, ask me more specific questions and I will give you more specific answers.
Carol: Yeah, there's a whole new patient in the room today. I, I see this, I, I see the change happening. The more people are educated, the more that they can walk into a consultation as an equal
Kimether: Mm-hmm.
Carol: on getting to a diagnosis. it is definitely changing. Not
Kimether: It absolutely is not fast enough. And unfortunately, just like with any type of change, with whatever change you, there's always, it's always gonna ruffle feathers. It's always going to, Uh, reveal, that some folks are not okay with that. Like there's, you definitely have your providers who think that a well prepared patient is a nightmare and I am just so, it, it just disappoints me so much.
Or they are already quick to dismiss 'em cuz they think that, oh, that's a patient that thinks that their Google degree is. Better than my medical degree. And I'm like, you know, if you go into it with that mindset, really, how much are you gonna get accomplished? Like, I can't blame a patient for one to try to find answers.
when I have a patient that has done some work and they've done their, their best to try to research what's going on and try different things, I applaud them for that. And, you know, I, I tell 'em, okay, you know, I know you know this, that you can't believe everything online. And, but I really am glad that you've started to try and figure out what's going on.
Now you have me on your team, let's try and figure this out together. it, it diffuses everything when I make it clear that we're on the same team.
And that it's a pleasure to be on their team and to help them figure this out.
Carol: I wanna be your patient right now. I'm gonna, you're in, you're in Maryland. I'm, I'm gonna move to Maryland. That's it. I mean, anybody in, well, we'll, we'll make sure people can find you. Before, before we go. I do. I know that you went to the Endo Summit and I would love to hear about the most important takeaways that you had.
And you also went with your husband Brandon, who is also the co-host of your podcast. Endo thick of it. and I, I think that that is, a so healthy that the two of you went together. And, it's kind of a dream situation because I think that a lot of people live with chronic conditions, and especially when they're gynecologic in nature, there can be a barrier with a male partner because they can't empathize or maybe just, you know, they're e they're empathetic, but they can't necessarily really get what you're going through.
Um, so what did you find most impactful at the summit this year, and what, and what did Brandon think was most impactful for him?
Kimether: first off, us going together was amazing. I'm so glad that we were able to arrange that with both of our jobs and all of our responsibilities. I realized that probably a lot of partners wished that they could bring their partner to, to the conference too. But, you know, sometimes just extenuating circumstances can make it difficult.
But it is, it is worth, doing it if one can, can make it work. Um, because I was able to receive information at the same time as Brandon and really process what we were learning together also. Up until the, to the summit, all of his endometriosis knowledge was coming from, from me. And I know every patient probably is accustomed to having to be the educator of their social network, of their, you know, their parents, their spouse, their children, like, and that can be exhausting as the one dealing with the disease, especially if you're still in a state of limbo where you're still suffering in multiple ways from the disease.
It can it be overwhelming to also feel like you gotta teach others too. So it was. Really refreshing for him to learn from the top folks in the field, uh, surgeons, therapists, researchers. I mean, I was really just impressed with the, with the lineup and the, diversity in the types of presentations.
Like I, thankfully we, we had an idea of what to expect with what, you know, what topics were being covered. And I was just so impressed that they really tried to address, multiple, corners of the endometriosis realm, with a, a lot of emphasis, particularly on the, on surgery, but only because we understand that.
Surgery is that, is really your, your best bet is that expert decision surgery. So why not hear from those who are doing it, what's working well for them? that was helpful for, for us to learn that too. But hmm. Some big takeaways
for me. I, even though I was able to learn a lot of clinical information that has already informed my. Medical visits, I mean, substantially have been able to inform my medical visits. My biggest takeaway was really the community, like being able to be in community with people who just get it. It was my first time experienced that man, I, I mean it, I underestimated just how amazing that part would be.
I'm, I mean, I'm, I'm a clinician. I came ready to take my notes and learn everything my mindset, I came into it as a clinician, but I left it as a fulfilled, empowered patient too.
But to be able to fulfill and nourish both sides of, of the coin there for me was awesome.
Carol: something that I think is, is a, sort of a new, like a new species maybe, I don't know the right word to call it, but before, I guess maybe the internet. But honestly, even like with the internet there, it was, it's, I guess it's really more like we haven't been given permission to talk about these conditions and to talk about our experience with them.
And we're supposed to downplay them or we believe we should downplay them And there's just this kind of siloed environment when it comes to receiving gynecologic care. And what I've noticed in the last five years, let's say, with organizations like The White Dress and with the Endo Summit, that there is like genuine, powerful community happening here.
And when you're in it, the feeling of being in a healthy environment is, is clear.
Kimether: it was a palpable, I mean, it almost felt like a, it felt like almost like a dream that was, that to literally be having conversations with. a surgeon, a patient, a pt, a counselor. Like we're all like Ashley, bringing our perspectives to the table. And there was zero silo and we're, I'm so used to them, just so used to everything being, um, just so separate, the patient and provider being just so separate.
And I feel like half my job is breaking those walls down between patient and provider, but I didn't have to do any of that there. it was so refreshing. I was so thankful for the surgeons, cuz most folks consider surgeons to just be kind of, Hmm, that's a
Carol: up on that mountain that we
Kimether: Yeah,
Carol: Mount Mount Health Landia.
Kimether: health landia, you know, and, and they come down periodically to do their thing and then they go back up there and, I, I don't have that mystified view of surgeons per se, just cause I've worked with some surgeons and, but even with even that, I still had the idea that, like, oh, well, you know, are they really doing this, out of the goodness of their heart or are, or is this,
Carol: Is it a passion
Kimether: is it a passion?
Is it a business? Is it financial gain? Is it, sometimes even being concerned that some might prey on the vulnerabilities of people in the endometriosis community. And it was, So, refreshing to encounter, all of these surgeons who were very personable, very approachable, and who were approaching others.
It's not like we had to seek them out and, and say, hi, Dr. Such and such, you don't know me. But no, that, like, they were wanting to talk to the patients and wanting to, to interact with this community that they've devoted their careers to. and that is amazing for, for them.
I really think it's to the benefit of the surgeons as well. I can imagine that it can be really easy to, to develop tunnel vision . And it can be easy to lose.
Sight of why you're doing this. That's for anybody and anyone in any profession that is overwhelming, challenging, and very demanding. It can be easy to, to lose sight of it. And I was really proud of each of the surgeons for not only taking the time out of their schedule to be there at the conference, but to also use that time to connect with the community in a way that they don't typically get to do.
Carol: Yeah. So, and then they get to bring that back and then we see the ripple effect because we're talking about it and everyone else is talking about it. And that's what really inspires me and others and, gives hope to where we're at right now with these chronic conditions. I was going to to ask you to give a pep talk to patients, but honestly we all just got, we got a few Masterclass, masterclass in Boundaries, masterclass in Compassion Masterclass in how to nail your doctor's appointment.
I mean, I really. Really hope that you would consider coming back on the show at some point in the future to continue this conversation, because there is a lot more that we can be talking about. but between now and then, how can people following you, how can they find the podcast and, if they are in the Maryland area, how can they be so fortunate to have you as one of the providers on their team?
Kimether: Oh, well thank you so much. Also, just before I even dig into all of that, thank you so much for, for saying that and, and it's challenging to be a clinician and I don't think anybody should pity clinicians, but it is challenging to be a clinician. and. when you're one that's trying to go against the grain, it's even harder.
I think all endometriosis specialists experience that they, they are going against the grain themselves even because they are often going against their, colleagues. They're sometimes are even ostracized for choosing to become endometriosis specialists. And, so for you to say, to say that it seems like I'm still doing good.
You know, it, despite the challenges is, really reassuring. It really helps fill, fills up my tank.
Carol: You're making a difference. You are making a difference. Big one.
Kimether: thank you. And so, best way to, to reach me, uh, is on Instagram, the Rebellious Uterus. that's my page. I made that page when I first learned that I was diagnosed with endometriosis, primarily as a way to not only.
get plugged into the Endo community, but to also be able to be a resource to others, to let them know, here's what my experience was, here's, what I can offer, how can I help, and then our podcast is endo thick of it, and it's available at all your major streaming, locations. And we're working to get it to even the smaller streaming sources too.
And we have an Instagram as well called just endo thick of it too, so you can connect with Brandon. and I, and unfortunately, at this time where I work is only for patients who are local, who are low income and are uninsured, which is very, very fortunate for that population. But it also, but it means that I'm not able to, take on patients who don't fit that very specific criteria.
Carol: And, and we're so grateful that you are taking that on .
Kimether: It was a big choice. I, I, but it's what I wanted to do. I really wanted my energy to go towards serving those, um, most in need. And, um, but I promise you, whenever I decide to retire from the, uh, health center community, health center life, I will let you know.
Carol: Yeah. Gosh. Please don't, don't fully retire from
Kimether: I won't. No.
Carol: part of this community because we couldn't do it without you. You are gifted. Thank you Kimer for being here. I'm so appreciative.
Kimether: Thank you too, Carol. You know, this was such a gift, and like I said, it really does, give me the encouragement to just keep doing what I'm, what I'm doing and, it's hard to go against the grain. It's hard to challenge others to, to do better, especially when you're trying to. Convince clinicians that we really needed to step it up for our patients.
so the more I do things like this, uh, just the more fuel that I, that I have. And I was originally fueled by rage and disappointment when I first started doing more advocacy work and patient education work in this area. But more and more that's being replaced by just the joy of knowing that I am actually helping others and hopefully ensuring that people can ultimately get access to high quality care that they deserve.
You know, and I'll be do, I'll be, I'll be doing that until I absolutely can't do it anymore.
Carol: I'm gonna call you every morning to let you know how amazing you are so that you
Kimether: Oh my gosh. I would love that. Right before I.
Carol: right? Wouldn't that be like the best if we just had, you know, like those, when I was younger you would have like the phone tree where your parents would get called if it was like a snow day
Kimether: Oh yeah. Yeah.
Carol: Round. Round. We're gonna do that. W wouldn't that be great if we could just break a Guinness Book of World Records if every female
Kimether: biggest phone tree.
Carol: right, that we just all called each other one after the other to just tell each other how amazing we are. I think that would, I think
Kimether: That'll be amazing. That'll be awesome. Sign me up for sure.
Carol: Okay. Excellent. Well, thank you so much for being here on Hello Uterus. We really appreciate it.
Kimether: Thank you so much again, and thank you for providing this podcast and the app for this population. I am thankful, uh, so much, that I was able to stumble across your podcast. I absolutely love it. Keep doing what you're doing.
Carol: Oh, thank you, Kenneth. Thank you. We'll be right back with ending on a high note.
In this week's ending on a high note, we're going mushroom foraging. I hope this is the first of many stories on mushrooms on this podcast, the little gem that has so much promise for humankind. But did you know that you can train mushrooms? I wanna know if I can train them to cook themselves, because if they did that, then I would eat.
More of them. And also like could you imagine if food could cook, cook itself? We could eliminate the processed food industry and we could just all be like magnificently healthy because the food would cook itself. I'm not sure how that would work with animal proteins, but that just, anyway. Let's get back to the mushrooms.
Let, instead of me fantasizing about not having to cook dinner, let's talk about this because it's fascinating. So this, this research comes out of Australia. Cigarette butts are one of the largest forms of plastic littering around the world. In Australia alone, an estimated 9 billion cigarette butts are discarded every single year.
I'm just, that seems like a lot. I can't imagine what it would be in the United States. So now Sustainability Victoria is funding a program that will keep an estimated 1.2 million buts out of landfills and waterways, where they end up leaching microplastics and other toxic chemicals like arsenic into waterways and into the earth.
And we know that these microplastics and chemicals impact wildlife, they impact, our ability to farm, our ability to. take care of our oceans, and they also impact our reproductive and endocrine systems. The program is run by a company that I am certainly going to reach out to, to have to invite on this show, a company in Melbourne, Australia called Fungi Solutions.
And one of the questions I'm gonna ask them, is it fungi? Or fungi? Because it's like fungus, Fungicide. I don't know. Anyway, we'll find that out and other burning questions that I have on pronunciation. but the program that they have developed involves training oyster mushrooms to consume cigarette butts for years.
Don't you wanna know more? I definitely do. Their process mimics one that occurs naturally in the wild. According to the program, the mushroom can break down a cigarette butt in seven days. They would take around 15 years to break down in a landfill, 15 years for a cigarette butt to break down. And the oyster mushroom can do it in seven days.
And it's not just cigarette butts. Mushrooms can eat plastic. And I remember talking about this on a podcast way back in the beginning. I think this might actually be our one year anniversary podcast, which, in which case, yay. but a few years ago I read an article about oysters consuming plastic and that they can do it effectively.
Like it, they understand how to do it. And here we are a few years later and it's still, it's still not happening. Now, if I ran the universe, it would be an instantaneous, I want mushrooms used in landfills and for recycling. I mushrooms everywhere. Just everywhere. Doing all of the recycling. Like why does it take so long when this is such.
A problem. Such a devastating problem that's causing considerable physical harm to people. It's causing cancer. it's a disaster. So mushrooms I like, what can't they do? That's my only remaining question that we're gonna ask. The beautiful Australia based funky solutions. Or Fungi Solutions, when they come on the show, hopefully they will.
So that is an, that's a wrap for a big episode. I hope you got a lot out of it. I absolutely did. I wanna thank Kimi Redman, and please check out her podcast that she hosts with her husband, Brandon. It is called Endo Thick of it. And check her out on Instagram too. You can also find us on Instagram and TikTok at Uterine Kind.
You can also find the Uterine Kind app for free to download and use in both the Apple and Google Play stores. Or you can download it from our website, uterine kind.com. If you listen to Kimether talk today, you will hear, that the, the app. And the ability to create a symptom story over time that you can turn into data and hand to your physician is a powerful tool to expedite a diagnosis.
So please check it out. We're so delighted to be able to offer it and thrilled to have you here as listeners. Please subscribe to the podcast, leave us a review wherever you get your podcast. That way more people can find the show.
By writing a review and recommending the podcast in your community, it will help spread the word and help spread. The incredible wisdom of people that we have on this podcast every week. And so that, that would be, we would really appreciate that.
And also, please do leave a review on the app after you download it in the Apple and Google Play stores, which also helps people find the app. Thanks again for being here. It is, um, such a pleasure to produce this show each week for you. Until next week, be well, be cool, be kind.