Medical Trauma and Endo – Transcript

Arti Shah: Hello, lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an endo warrior and everything in between. Welcome home.

In today’s episode, we discuss medical trauma and endometriosis, basic guidelines and questions to ask doctors when dealing with this journey of endometriosis. And the stages of endometriosis and how they’re not relevant when it comes to every patient dealing with this condition individually. But I want to dive in a little bit deeper about medical trauma because of endometriosis.

Medical trauma refers to a patient’s psychological and physiological response to pain, a traumatic experience in a medical setting, a serious illness, which in this case is battling endometriosis and frightening treatment experiences due to dismissal by certain doctors. Medical traumas sometimes can be viewed as an accurate onset of a disrupted physiological system in which the ongoing threat is internal and we feel it deep within our body, which sometimes exacerbates symptoms of endometriosis. And this can be long term or permanent, if not dealt with by seeking professional help. The symptoms of medical trauma because of this frightening experience when dealing with endometriosis due to some of the doctors, family or society not believing us can be in forms of anxiety, depression, fearfulness, muscle tension, sleep disturbances, emotional numbing, hypervigilance, digestive issues, can give us a lot of flashbacks, intrusive memories, thoughts, or nightmares, and a lot more depending on the mental health of that patient.

I went through many therapy sessions with a professional counselor in order for me to deal with the medical trauma, not only caused by endometriosis, but also other difficult challenges I experience in my life. The coping mechanism tools I was provided in my therapy sessions have helped me, not just as a patient, but has helped me in this advocacy journey for endometriosis.

Hence why it is so important to listen to advocates who have dealt with this side of living with this condition, and who have also known how to deal with the emotional trauma that is so often related to endometriosis. In today’s episode, we continue talking to Katie, who is a board certified patient advocate for endometriosis from America.

So looking at your journey, how has or did endometriosis affect you emotionally? 

Katie Boyce: You know, sometimes I get little flashbacks, you know, what, what I had been through and I don’t, I don’t, I don’t like it. Um, I don’t like to sit in those feelings, but sometimes I know, you know, it’s okay for me to do that and reflect.

I’ve had years of therapy, and I’m grateful for that because I feel like it puts me in a position now where I am emotionally stable in that enough with those experiences that I can help others move through theirs. I see a lot of people try to become an advocate after, you know, they have, they finally reach a surgeon that is gonna change their life.

They have surgery. Maybe they’re feeling fantastic and then they’re empowered and they want to help. The next kind of like step I see in this process is that patient actually unable to advocate and help because they haven’t sifted through their trauma and so they just can’t handle it. They can’t handle the, the messages.

They can’t handle the threads. They can’t handle the posts talking about, you know, what’s happening to people, what’s happening during their appointments because they’re getting, their, their own traumas are being relived. So that’s a really important part of advocacy that I think gets skipped over. You see a lot of burnout and people just kind of disappear.

It’s because there’s a lot of trauma to sift through. And honestly, if it hadn’t been for, you know, the years and years of therapy that I’ve been in to process, there’s, I wouldn’t be able to do it. You know, and I have people ask me, How can you do this? How can you do this? I’m like, Well, you know, I, I physically feel a lot better.

That was step one, getting to my surgeon, and then I had to sift through all of the trauma that was associated with it, with, with therapy, you know, and it’s been really important at the beginning stages of doing my advocacy to have my therapist to lean on. So one of the reasons I can help is because I’ve been through that, but I still have my moments.

It doesn’t just go. . You know, I’ll never forget being left in a doctor’s in OBGYN’s office crying on the, on the table. Um, and he walked out. He stormed out and left the door open because he said I wasn’t, he said, I can’t help you. There was no, let me refer you to so and so. Maybe go follow up with your primary care.

It was, I cannot help you because you aren’t taking the medications that I’m suggesting. And he stormed out, you know, and that’s one of those experiences that I imagine someone else going through. And I get a fire under my ass . Cause I went through the trauma. I processed the trauma, I went, you know, the emotions of that.

And now I got a little bit of anger still left in there. But I utilized that anger to help others. And tell them that is not okay. And I don’t want anyone else to ever be in that position and crying and feeling hopeless and helpless. Now I hear from patients that are empowered. They say, Okay, I did X, Y, and Z, and I went into that office and that doctor told me this, that I said, I’m not going to stick around with you and walk out.

They don’t. They’re not having to cry alone and be scared anymore. And I’m just like, That gives me chills because I so wish I had had that courage and that support to do that then. When we say it’s a whole body disease, it’s a whole body disease almost forever. You know, it’s, and I include the emotional part of that for me.

I do not think it’s okay when a doctor says, Oh, it’s in your head. You know, you need to go to therapy or counseling. I don’t mean that at all. I mean, once you’ve already been through that and then it’s time to process what you’ve experienced. For me, there was no way I was gonna do that on. You know at that point that has then the disease at that point has affected my emotional wellbeing.

Arti Shah: Yes, definitely. There’s no way we can go through this on our own. That is why we keep insisting that if you need to seek professional help, please do so. There is no shame in it, and we have to break out of this whole taboo surrounding seeing counselors or psychologists when it comes to dealing with mental health.

Katie, what are some of the basic guidelines and questions to ask doctors when dealing with this journey for endometriosis? 

Katie Boyce: Every country, you know, has their own unique healthcare systems and trainings and tiers on how you know who to and what to get to. So I like to line out like almost basic guidelines for what to look for and questions to ask. The very first thing to look for so say you’re, say you’re even just on Google and you’re like, I need an endometriosis specialist, first and foremost, anybody can call themself one. There is no formal training to be an endometriosis surgeon. Um, most of the time that just comes with years and years and years and years of experience with these surgeons working on endometriosis patients.

So it’s really important to be mindful. Okay, I look this person up, they’re claiming to be an endometriosis expert. Okay, so what’s step two? Step two is I try to see, you know, what are their credentials? You know, that’s not the most important thing, but it’s just a basic, you know, stepping stone. Okay. Let’s go through.

Have they done a basic additional training? So, at least here in the United States, you can do your, your medical school, your residency, and then into your specialty. Or they can go into a fellowship program where it’s basically like honing in on a skill a little bit more. So here they can do an additional two years of gynecological surgery training, and it’s called a MIGS, a minimally invasive gynecological surgery.
And that’s kind of like the bare, bare bones of being able to do surgery, right? That just means that they’re probably not going to cause too much damage or an accident in surgery. I know that sounds scary, but that’s the unfortunate reality. Then you wanna look at, okay, so say they have done that additional two training two years of training.

Okay, Awesome. Are they still doing obstetrics though? Are they still seeing patients that are pregnant, are they still seeing, um, routine patients just for, you know, yearly care? Or are they only a surgical center? Are they only performing these endometriosis surgeries? If they’re still doing obstetrics and caring for pregnant patients, I really just, I step away from suggesting them or thinking that they may have the potential to really specialize in this because endometriosis surgery is so complicated that these surgeons that are doing it are dedicating their lives and their days day in and day out. There is no other time to see another type of patient.

Okay. They’re still doing obstetrics. I’m gonna move on to looking for the next doctor. Right. Who else is on this list I wanna check out? Say they do only do surgery then. Okay. That’s amazing. So then it’s okay to find, you know, reach. And see, you can read reviews on them. You can dig into their website more, or you can even contact them if you can find their contact.

And it’s really important then, or if you want, go ahead and make an appointment and you can do this in your appointment. That is when you ask, Hey, how many surgeries for endometriosis per month are you doing or per week? Right? Do you work with a team? Meaning do you have a colorectal surgeon that you work with?

When you think that there’s bowel endometriosis, do you work with radiologists that do specialized advanced imaging? You know, can we do these specialized, they do what are called like dynamic ultrasounds. Are they doing, you know, MRIs and then you know, if there’s suspected endometriosis in the thoracic cavity?

Do they have a cardiothoracic surgeon they work with? If you ask those questions and they look at you like you’re crazy, like nobody gets endometriosis in their thoracic cavity, that is a really big red flag right there. If you have no other options, right, which is common around the world cause there’s so few of these great surgeons.

It’s not necessarily run out of the office right then and there, but just kind of continue on the conversation to see, okay, well, maybe they don’t think that it’s worth investigating thoracic endometriosis, but they are doing multiple surgeries per week. Okay. They still may have the skill to, to at least remove the disease they find, you know, not in the thoracic cavity and so they can still anything below that, which includes extra pelvic or pelvic endometriosis. Um, it’s important then to say, okay, do you put patients on hormone suppression after surgery? Do you think it’s necessary? If they say, Well, sometimes after excision surgery, the few menstrual cycles afterward can be more painful for patients so we like to do a continuous birth control. That’s not a red flag, right? That’s you’re gonna be in pain if you wanna take a birth control to maybe calm, you know, give your body time away from having a, a menstrual cycle, that’s fine. But they should also not force it. They should just say, if you want to. If they say, Oh, you need to be on Lupron, or Zoladex or the Pill, or Alyssa, that is a huge red flag because that means that they, A lot of the times they’ll think that if there was any disease that they didn’t see or they missed or weren’t able to fully excise, sometimes there’s this idea that those hormone suppressions will actually dry up the rest of the remaining endometriosis, which we know is not the case.

Based on quite a bit of data, so that, that is actually a red flag for me. I would not pursue surgery with that individual because that means that they don’t trust their skill. Um, if a patient is suspected to have something called adenomyosis, which is a uterine disorder, that actually does cause significant cramping with periods, it’s very common for them to suggest, um, an intra-uterine device, which in the United States we call a marina, that is not a red flag.

That is something that is, um, that is something that can help a lot of patients regain their life. So, you know, especially if you have adenomyosis, really the only cure for that is a hysterectomy. And obviously not all patients are ready for that. So if they say, Okay, you know, let’s see if the IUD helps.

And what’s awesome about that is that they can put that in, they can place it before you wake up from surgery. That way cause it can be painful for some patients and I really like that. You know, it can, you just wake up and it’s already there. Of course, that comes with a lot of informed consent on, you know, knowing, you know, if, if you don’t want it, making sure that that doctor is willing to remove it for you.
I know for the Center for Endometriosis Care, they utilize the same colorectal surgeon and they always utilize the same cardiothoracic surgeon. I know that they’ve done over 600, uh, cardiothoracic, endometriosis, surgeries. So that surgeon has done over 600 of those. So he knows, you know, they’re, they’re a fantastic team at that point.

It’s not just whoever’s on call that day, can they come in Because it does take a very, you know, trained eye to be able to recognize the different forms of endometriosis. So there’s sometimes, there’s what’s called superficial endometriosis. I ask, do you believe that that endometriosis also needs to be excised, or do you just cauterize and burn that off because it looks like it’s just on the surface.
They should most, I would say most of the surgeons I speak with that specialize in this, they excise all disease. There are a couple that are good surgeons that will say, occasionally they see a little bit that they don’t mind cotorizing. But the reason I am, I’m adamantly against that is because how do you know it was even endometriosis if they’re not gonna remove it and send it for biopsy?

That’s, Oh, and that’s, that’s another thing, you know, you ask, are you going to remove these tissues and send them as biopsies to the lab to confirm that it’s endometriosis? Sometimes it’s not, and it’s important to know if it is or it isn’t. That way, if it’s, if it’s not, okay, well let’s start investigating something else as your pain.

It’s a lot to look through and think about, but I, you know, I always encourage writing these questions out, like as a little checklist, so in your appointment you can go down, or when you’re looking online, you can go down and you can just check off the boxes. And then as a patient you can decide, okay, what are you willing to let slide, right? Are you okay with them? You know, just kind of burning off, you know, superficial tissue? That is up to the patient. You know, say the only doctor they can find and the only doctor they can afford is one that does that. Okay, fine. You know, as long as they’re removing deep disease and they’re confident in doing that. Okay. You know, so it’s, it’s not as cut and dry as I wish it were. It used to be before I got to know this community a little bit better. I used to be like, Okay, only go to this type of surgeon and don’t go to anybody else. Well, then I realized that’s not available to everybody. Not everyone can afford that kind of surgery.

So it basically boils down to what is the best you can get for your situation? And here’s a checklist. 

Arti Shah: There are different stages of endometriosis, but these stages no longer define the severity of the condition or the levels of pain an individual goes through because a stage one patient, Could have more pain and adverse symptoms than a stage four patient.
Katie, what are your thoughts about this? 

Katie Boyce: The issue with endometriosis is that, yes, some people with endometriosis will experience infertility, but most people are going in for surgery for endometriosis because it’s a, we’re experiencing pain, right? Where it’s located or how much endometriosis is present, we know does not correlate with how much pain a patient is experiencing. So based on this old staging guideline, someone could have what’s quote called a stage one, which is listed as minimal, but that person was stage one. Can it be in more pain than somebody that’s considered stage two with more disease? And we know this because someone will have be battling infertility and they’ll go in and have surgery just so that it can have a look to make sure everything looks good in there.

And they’ll be like, Oh my God, this person’s got stage four endometriosis. But they never experienced any pain. Meanwhile, you’ve got one patient that’s got stage one and they’re debil. They’re in debilitating pain, and it gets complicated too. So then, is it really even stage one or is that doctor missing endometriosis somewhere?

Do they know where to look? Are they pulling the right organs back? Are they, you know, are they really even investigating it properly? And the other part about endometriosis, I, I spoke earlier on the scar tissue and the adhesions, that’s not included in the staging process. That those, those adhesions and that scar tissue is incredibly painful.

And like I said earlier, it is a manifestation and result of endometriosis. So it does need to be included, but it’s not, I think for the sake of being an endometriosis patient, I think it’s just important to have a surgical report that explains where your disease was, where they removed the disease from? Do you have a lot of fibrosis? A lot of us have what’s called retroperitoneal fibrosis. And is there a lot of scar tissue adhesions? You know, look for that. And that’s more indicative of is the disease quote advanced or not? But even then, it still just doesn’t correlate to the amount of pain a patient may be in.

And I, I’m glad less and less doctors are really putting an emphasis on it. Cause it used to be you go in for your surgery, they look around, you come out and they tell you what stage you were in. So then you get, it’s almost like. Then it was like, I saw it on the online community almost being like a competition.

Oh, I had stage four. Okay, well that doesn’t mean that you are suffering more than that person was stage one. I never talk about my quote stage right. I was stage three, and when you look at it, it’s based on, you know, where, where are the lesions, how many, blah, blah, blah. But there are people who may have stage one that were in more debilitating pain than I was.

I think it’s important that we don’t focus on that, especially in the patient community, cuz it can just be like, Oh, well I had it like this, and to me that’s not important. You know? It’s how is your quality of life being affected? 

Endometriosis is a very complex inflammatory condition, and so it needs to be treated very delicately and taken seriously.

Arti Shah: Katie, what are your parting words? 

Katie Boyce: I do like to always finish that as a patient advocate, my role is not to tell patients what to do, but it’s to help guide them and make sure they’re getting all of the information that they deserve so that they can make their decisions based on an informed consent.
And too many patients are not getting that. They’re getting prescribed a medication without being fully, um, informed on all facets of that medication. Know what are potential side. It’s been hard as an advocate to not tell patients what to do, you know, and I see a lot of newer advocates try to do that.

Oh, you need to do this. That’s not actually the role of advocacy. The role of advocacy is to help others, you know, really grow into themselves for advocating for themselves, you know? So I walk alongside them and I say, Here’s all of this information, how would you like to proceed? Okay, if that’s how you’d like to proceed, Let’s look into this.

You know, so here’s information about this medication that you wanna take. You know, here are the potential long term effects. Here are things that may happen, may not happen. Here are options that you can take if you don’t like this medication. You know? So it’s not about my opinion and it’s not about my feelings.

It’s about how is that person wanting to move forward in their healthcare? How is it’s their life? It’s not mine. And it’s really important as an advocate to make sure that I’m not pushing my ideas and my what I think is right onto them. And I think that that was one of the hardest things I learned as a patient advocate, but it’s actually really empowering to watch patients make these, this decisions for themselves.

Arti Shah: Katie, thank you so much and it’s been a pleasure having you on my last two episodes. 

Katie Boyce: Thank you for trusting me with, you know, sharing this information and it means a lot to me. 

Arti Shah: Thank you for all your nuggets of wisdom when it comes to patient advocate for endometriosis. Living with endometriosis is a long journey, but with the right guidance and the correct education of how to tackle this condition is definitely a game changer for the quality of life for the patient.

I hope this episode has been helpful, and remember that education is power, so use it correctly. Empower yourself as a patient. And be sure to get your information from the right sources. You are not alone and you do not have to walk this journey of endometriosis all by yourself.