Correcting Misinformation About 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 ender warrior and everything in between. Welcome home.

In today’s episode, we discuss the importance of correcting misinformation around and about endometriosis. We also discuss what to do if you’re dismissed by doctors and questions to ask the doctors and the importance of advocacy for endometriosis. Those living with endometriosis turn to online resources for information and support because unfortunately, endometriosis is a very under researched inflammatory condition and is not taught as a condition in itself as a whole. Therefore, it’s so important to make sure you are getting all your information and support from the right sources available. We have too many pharma driven advocates who push for usage of certain drugs and too much misinformation being circulated by a lot of OB-GYNs, non gynecological doctors and selected media houses. This not only leads to patients getting the wrong treatments, development of other conditions due to the side effects of certain medications, but also leads to have a cause by the society for the patient. In today’s episode, I will be talking to Katie, who is a board certified patient advocate for endometriosis from America and we will be talking about the importance of correcting misinformation around and about endometriosis, what to do if you’re dismissed by doctors, and the importance of advocacy for endometriosis. Hi Katie, and welcome to A Ray of Sunshine. 

Katie Boyce: Hi, thank you so much for having me. My name is Katie, I’m from Arizona in the United States. I am an endometriosis patient. I have battled this disease for well over 15 years. My story is very much like others with endometriosis. Going years without a diagnosis, misdiagnosis, being dismissed, before finally finding a surgeon who took me seriously and was able to help me get my life back. Because of that experience, once I started feeling better and recovering from my last surgery, I really got inspired to help other endometriosis patients be able to find the same kind of care that I was able to receive. I went out on this little journey of trying to figure out the best way to do so, and I found that at least here in the United States, we have a board certification for being a patient advocate. So I proceeded with that process. It was pretty lengthy. I definitely had to do a lot of studying. It was much more intense than I had originally realized. Um, it was more than just making cute posts on the internet about endometriosis, you know, So it was a much more broad, advocacy endeavor than just endometriosis itself.

So I was able to, you know, go through this process, learn so much more about our specific healthcare process here in the United States so I can better help patients navigate that process and help them find better care. 

Arti Shah: Katie, what’s helped you to break down the information about endometriosis from a scientific and medical perspective and an advocate perspective for patients?

Katie Boyce: I have a background in biochemistry. That’s what I went to college for. So that’s really helped me in the process of being able to take the information, the medical literature information, the scientific information about this disease and break it down for patients. That’s something I really enjoy doing.

I think there’s a lot of power and patients knowing that. So that’s kind of the brief background, um, on what I do for advocacy, and you know, how I accomplish that. And for my everyday career, I am a consulting chemist, so I, I’m still very much involved in the scientific realm in my life, even outside of endometriosis advocacy.

Arti Shah: Katie, as you know, and as many of us know, that obtaining proper care for endometriosis is our greatest challenge. So why is it so important for obtaining proper care for this condition. Why is it important to get the definition of endometriosis correct in the first place, and why is it so important correcting misinformation regarding endometriosis, especially from a patient perspective. 

Katie Boyce: It is one of our greatest barriers that we face in obtaining proper care about proper care of endometriosis. You know because it was originally seen as a working white woman’s disease. That really is what shaped all of the original research and information about endometriosis.

So there was this big focus on it being well, these women weren’t getting pregnant and having babies at a young enough age, and because they weren’t doing what they were biologically quote biologically supposed to be doing, they ended up getting this gynecological disease. That’s really how it started.

However, now we know that’s not the case at all. We know that it’s not a white, a working white woman’s disease by any means, but I like to make sure that we know that that’s how the idea of it used to be so that we can kind of greater understand why the research on endometriosis has been so flawed, because it wasn’t seen as such a broad disease.

It was just focused in on it being gynecological. And the ultimate cure for that for them was to have a hysterectomy, right? So these doctors were just like, Okay, this is the problem. We can just, we can solve this problem by doing hysterectomy. So what came out of all of that, was this definition of endometriosis, that it was just endometrial tissue from the uterine lining that was back flowing through the fallopian tubes, which is called retrograde menstruation.

And then it would, the idea was that that tissue was implanting the, from the, the menstruation was implanting around the pelvis and then the body wasn’t able to clear it out with the immune system and it would just stick there and infiltrate. It’s pretty extraordinary actually, that even though we know much more about endometriosis these days, and we know that endometriosis tissue is not the same as the uterine lining, it’s pretty bizarre that this idea is still what goes around.

This is one of the reasons that we’re so big on correcting this information, right? So we’ll see someone say endometriosis is when tissue of the uterine lining is misplaced in other areas, and then they’ll go on to say, one of the main reasons we believe this happens is because of something called retrograde administration.

So right there, right. We’re starting out with just a whole horrible, fundamentally inaccurate basis there, right. So then, and then this is pretty much information that’s been going around for so long that it’s kind of just considered fact by a lot of doctors, right? So I’m still hearing from patients that’ll go into the doctor’s office and explain the situation and the doctor is still telling them this.

It’s difficult because so conditions considered fact by this point that even though the individuals, the, the doctors who may specialize in endometriosis and the researchers who may dedicate their lives to endometriosis, even if we don’t all agree on the same page. They at least know that that’s not a hundred percent accurate.

But our regular doctors, our regular everyday OB- GYNs, they’re not taking the time to dive into the research. They don’t have the time, so they’re kind of just going based on what information that was either taught to them decades ago in school, or maybe they didn’t, maybe they graduated more recently.

But we, we know at least here in the United States, that in medical school what they’re taught about endometriosis is real brief and similar to what’s always been kind of taught before. And so it’s hard because I don’t want to get angry with just the everyday doctors. I don’t think that they necessarily mean us any harm.

I think that they’re just kind of regurgitating what’s been given to them. It shouldn’t be on the patient, but it is on the patient. For when we see this misinformation, it’s really important for us to say, No, actually, we do know and provide the sources, right. That the, that endometriosis is tissue that is kind of similar to the endometrium, but it’s significantly different.

And it’s different enough that we know it’s not the same entity. And we know individuals now that have a hysterectomy and still have endometriosis. There’s research that has shown multiple fetuses that had endometriosis. As we’re investigating this disease more, we’re, we’re really understanding that it’s not just some simple, Okay.

There’s, um, retrograde menstruation happening, and then we’re getting endometriosis. Oh, and we now know that about 90% of individuals with a period do experience retrograde menstruation, but only about 10% of those individuals get endometriosis. So that’s another thing. Well, why is that occurring? Right?

It’s much more convoluted and complicated. And so it’s just really important that we are pointing out all of these differences between, you know, endometriosis and the endometrium. 

Arti Shah: We know very well as patients that endometriosis is a whole body condition. It’s not just about affecting the areas where endometriosis is, or the endometriomas grow as we know it affects every organ, but also mentally and physically.

And we also know how important it is for an excision specialist, or an excision surgeon for endometriosis to work in a multidisciplinary team. But let’s hear what you have to say about this and also why it is so important for OB GYNs to refer the patient to somebody else when they cannot deal with the specific condition or the specific area that a patient has come to see them for.

Katie Boyce: There’s a reason that, our, our great excision surgeons that treat this disease, and when I say treat, I mean they’re cutting out the disease. They work with surgeons of other disciplines. You know, when you have thoracic endometriosis, they’re working with a cardiothoracic surgeon. If you have bowel endometriosis, they’re working with a colorectal surgeon.

So it’s really important that you know, when a patient presents with certain symptoms that all disciplines are able to pick up on those symptoms rather than just a poor patient going to an ob gyn and being like, I have pain in this pelvic region, or I have painful bowel movements, and they just say, Oh, that happens sometimes with periods or they say, you’re just, you’re just constipated, let’s adjust your diet. And what needs to be happening there is referrals. An ideal world, you know, an OB-GYN would then refer a patient to, um, like a gastroenterologist, and the gastroenterologist would have enough education at endometriosis to know that their colonoscopies will be clear because endometriosis occurs on the outside of that tissue rather than on the inside, you know, so it’s just this broadening endometriosis from this little, you know, cutesy menstrual issue to a whole body disease that all subspecialties really should have some form of education, and so that they can come together and say, Okay, this patient is experiencing this and these symptoms, now let’s get, you know, proper imaging done. Now let’s get the other specialist involved. I like to say I’m in remission of my endometriosis, and I don’t mean, and all that means is that I don’t experience symptoms associated with my endometriosis anymore and that there’s no evidence of having my, having endometriosis recurring.

So I did have a surgery six months after my excision of the disease, and there was no, you know, recurrence or persistence left there. So I feel confident in saying that, but we know that there is no cure. But with having, you know, the endometriosis, not the primary pains I experience anymore, I was able to investigate, you know, some back pain.

And it’s just really interesting because that was treated significantly differently. You know, when I presented to the doctor with that, my primary, my primary then referred me to the proper orthopedic specialist for my. And then I had the proper imaging done, and it’s just that needs to be happening for endometriosis as well.

Arti Shah: We’re often told that the pain is in our head or it can’t be that bad, or the symptoms are just over exaggerated. And what we are going through, we’re not believed in. And so this results in being dismissed by the doctors. 

Katie Boyce: Raise your hand if you’ve ever been dismissed by your doctor for your pain. So, you know, and I feel like, my story, I hear repeated over and over and over and over by all the patients I speak to, especially the bowel issues. You know, endometriosis just seems to be notorious for causing bowel issues and bowel pain, and it’s just unbelievable how many of us are told, well, you know, let’s, let’s change your diet, let’s increase your fiber, you’re probably just constipated. And we’re sitting there thinking to ourselves, But wait a minute, I’m doubled over in pain before a bowel movement. Okay. I guess that, that’s just normal constipation, you know, And we don’t know, It’s not our job to know this. So we, you know, we go about maybe making those dietary modifications.

I had a doctor try to prescribe me an irritable bowel syndrome pill, you know, that is another often, um, utilized misdiagnosis is IBS. Or they’ll go in, maybe you do get, sometimes you, sometimes you do get referred to a to a GI specialist and they go in and they do imaging. They’ll do a colonoscopy, but everything’s always clear, right?

Endometriosis is rarely going to infiltrate all the way through to the point where it can be seen on a colonoscopy. So, you know, then that just like allows your OB-GYN to double down and say, listen, see, there’s nothing wrong with your bowel. It must be something else or something we can’t explain when and if that happens and you, we know our bodies, right? So if it does not feel right and nothing’s changing, it is absolutely time to move on from that doctor. And I think a lot of patients don’t realize that it is absolutely 100% okay to leave that doctor. You know, we don’t owe those doctors an allegiance. It’s amazing and wonderful when we find one that we want to stay to stay with, but sometimes we move outside of their realm of, you know, specialization.

So I, I also speak with a lot of patients that are like, But my OB-GYN is so nice and you know, they were the first ones to believe me about X, Y, and Z. And I’m like, that’s fine, but we can’t sit here and try to make sure we don’t hurt their feelings at the expense of expense of our health, right? If they’re just telling us, listen, you know, I think it’s just IBS, but you know, deep down that is not something else is very wrong there. There’s nothing wrong with saying to yourself, I’m going to get a second opinion, I’m going to get a third opinion. And I often, at this point, I really suggest having a really great just primary care physician that’s not an OB-GYN, so that you get a more whole body view rather than them focusing on maybe those reproductive organs.

I’ve had my best luck personally with primary care physicians, and I don’t even see an OB-GYN anymore because I can’t. I’m so, you know, I don’t ever play, I don’t ever really talk about this, but I am so traumatized from going to the OB-GYN that I cannot even walk into an office anymore. So I only go to my primary, my primary’s capable of doing pelvic exams if necessary, and caring for me in that way.
I’ve had a hysterectomy, so I don’t need any kind of obstetrics care for pregnancy. So I just stick with my primary and they’re able to kind of, you know, take a look back and they’re better about referring out, right? Because they realize that their role is primary care position to when something arises, to find out the right specialist to send you to.

So I really encourage patients to find a solid primary care position that they can develop. Relationship with, and that doctor will get to know your body. You know, you go in and you explain, you know, this is what’s going on today. This is what’s going on. You know, this is what happened last week. And sometimes it takes a while to find that primary care physician that can be your, like, solid rock.
So, you know, I, I feel like, you know in your gut when it’s a right match, you know, so, and I’m really big on that too. You know, what, what are you feeling? What is that intuition telling you? Are you having a good relationship with this doctor? And some people, some doctors are really wonderful, but you’re just not a good fit.

And there’s absolutely nothing wrong with that either. And so, and you want a doctor that’s going to not dismiss you when you say, listen, I think I have endometriosis based on these symptoms, and I see that endometriosis can commonly cause bowel issues. You know, where should I go from here? And in a perfect world, that primary care physician would then say, Oh, we have an endometriosis ex excision specialist, let’s send you there.

Cause these excision specialists are not OB- GYNs that are just performing regular routine pelvic exams or providing obstetric care. These are, these are extraordinarily, highly skilled surgeons. And so that is then where we need to be referred because that when you get to that point, those surgeons know. Okay. These are the pain these are the symptoms that present when endometriosis is in, is in this location. This is the type of imaging we need to get done. Okay? The ultrasound may come back clear of anything. The MRI may come back clear of anything, but let’s get it done just in case, you know, sometimes that really intense bowel disease will show up on an MRI, so then that way the surgeon knows and then they’re prepared for surgery.

Or maybe nothing’s showing up on imaging, but the surgeon still knows. Okay? That sometimes endometriosis can completely evade all imaging. Doesn’t mean it’s not there on that patient. My first step usually is, okay if you’re being dismissed by your ob gyn, because that’s typically who we go to for pelvic pain.

You know, get a solid relationship going with a primary care position cuz they’re gonna see, they can, they kind of got a, a wide, a wide view of the body rather than focused in on gynecological and then move on from there. It’s hard, but it’s important to know that like, it’s just, I, I always try to encourage patients. 

Arti Shah: So when we’re dismissed by these doctors, what advice do you give to the patients from your expertise?
Because you know, sometimes you feel that, you know, you feel guilty for leaving this doctor, but this journey by being dismissed by one, is just so mind boggling and it actually plays with your head. 

Katie Boyce: You can find another doctor, you can’t move on. It is you do not owe them anything, especially your sanity, especially your health.

So, you know, please just don’t give up. And no, I’m not a fan of, you know, Dr. Google. But in a lot of cases, you know, it is not the right route to go with diseases and Googling symptoms. But when it comes to endometriosis, the unfortunate reality is that, a lot of the information is incorrect. So we do have to find a lot of our information from online communities.

Fortunately we do have reputable, um, endometriosis surgeons with great websites. So that’s one place to start and it’s becoming much more known and it’s important when you follow, you know, say you find an account on social media that you really like, make sure that they’re providing those sources. Right.

Okay. So are they citing medical journal? And that’s something else I, I encourage patients to do is learn how to read these scientific papers. And I, I help them know, you know, what level of evidence is this, was this, is this considered a high level of evidence or is this kind of considered, you know, oh, just a little trial that isn’t that great of evidence.

And so look for, you know, accounts that are, are encouraging proper education about the disease they’re sharing. Facts that are backed with sources. You know, and I, I would encourage staying away from the fear mongering and the really sensationalized information because, you know, you’ll get, you can fall into the trap of people saying that they can cure your endometriosis with their diet.
You know, And that’s also harmful so that you may be able to manage your symptoms. But when it comes to actually finding the proper care for endometriosis, that’s a different route than finding your ways at home of managing your symptom. 

Arti Shah: So you see it’s absolutely okay to get a second opinion, a third opinion, or even a fourth opinion if you are being dismissed by your doctor when it comes to living with endometriosis, because as we know, the back and forth of living with endometriosis, being dismissed and just not being believed causes a lot of medical trauma.

This medical trauma is both physical and mental. I hope this episode has been helpful, and remember that you’re not alone with very many advocates who are out there, so make sure you get your information and advice from the right resources available.