Why Is Endometriosis So Hard to Diagnose? (Episode 612)

Full Transcript: Episode 612

Lisa Hendrickson-Jack: This is the Fertility Friday podcast, episode number 612.

In today’s episode, we are tackling a very important and common issue. The stats on how long it takes women to receive a conclusive diagnosis for endometriosis are absolutely staggering. In The Fifth Vital Sign, I shared a study that showed on average it took anywhere from eight to 12 years from the onset of painful symptoms for women with endometriosis to actually receive a true diagnosis. And this is after going to multiple physicians, multiple practitioners, and essentially not having their symptoms taken seriously. So that’s one of the issues.

And then, of course, another issue is lack of awareness of providers of the common symptoms of endometriosis or the latest research or any of those kinds of things. So today we have an incredible opportunity to go through a qualitative study.

And I always love, if any of you have listened to the research series, the FAM research series, you know that I love when we can get our hands on a qualitative study. I absolutely love data. I love when we can have stats and all of that great information. But I really like quantitative studies because they provide you with insights for how the participants feel, what the participants are saying. And it gives you a bit of a different perspective on the issue.

So we are going to go into a really interesting study called “That One Doctor.” And even the title of the study gives you a bit of a preview of what the researchers found. They just found that over and over and over again, women were going from doctor to doctor, practitioner to practitioner, and eventually they found that one doctor who actually put a name to their symptoms, took it seriously, and really facilitated that process of them finally being able to get a diagnosis. So without further ado, let’s go ahead and jump into today’s episode.

So as I mentioned, the topic of today’s episode is about endometriosis and how long it takes to get a diagnosis. And though we are focused on endometriosis, I do think that there are pieces of this that apply to many different women’s health issues, particularly hormonal and menstrual cycle issues, because there are plenty of issues that are kind of ignored, discarded, not really taken that seriously. And so certainly those themes run through this episode, but of course our focus is going to be on endometriosis specifically.

And so as I mentioned in the introduction, the research paper that I’m referring to is called “That One Doctor.” What was really interesting is the reason that they titled the study that title, “That One Doctor,” is because when they were doing their qualitative analysis of these women’s experiences, getting to that actual endometriosis diagnosis, so many of the women referred to that one doctor who actually said the word endometriosis, who listened, believed, and investigated and provided a prompt referral to a specialist.

So often these women had been struggling for years to find a practitioner who would take them seriously, who would not just dismiss their symptoms, who would really listen to what they’re saying, not simply put them on another drug or whatever it is, but actually look into the condition, educate them about it, and help them to find answers. And I suppose because that particular phrase came up so much, that was why the researcher titled the study “That One Doctor.”

So I wanted to start with some background information about endometriosis for those who may not be as familiar. Endometriosis is a very complex chronic inflammatory systemic disease that commonly presents as pelvic pain. That can be pain with menstruation. It can be pain with sex. It can even present as digestive pain or it can be associated with digestive upset. And so there’s a lot of different ways that this illness can present.

Endometriosis typically involves benign endometrial tissue that is growing abnormally outside of the uterus. So instead of the endometrial tissue growing inside the uterus, these lesions form outside. And sometimes they form on the walls of the abdominal cavity. Sometimes they form on other organs, such as the bladder and bowel and ovaries. And as we’ve talked about in other episodes, I’ll link a few episodes below this episode if you’re wanting to refer back to some of our previous podcast episodes. Sometimes these lesions can grow in other atypical locations, including even the lungs and the diaphragm, a variety of different places that you wouldn’t anticipate to find endometrial tissue.

And so this endometrial tissue growth can lead to severe pain. It can potentially lead to infertility, fatigue, and it can lead to a variety of issues depending on where it’s located. So if you have endometrial tissue on the bowel or the bladder or the lungs or the diaphragm, it can cause specific problems in those areas. And for many women, these lesions are also active in relation to the menstrual cycle. So many women who have these types of issues, they’ll find that there’s a cyclical relationship there where some of their symptoms may kick up as they approach menstruation. And of course, these types of complications can have a significant negative impact on quality of life.

And getting back to the reason that I’m sharing the study with you today, one of the most concerning stats related to endometriosis diagnosis is how long it takes to diagnose. There was an interesting study published in Human Reproduction, and they surveyed 218 women with a surgically confirmed endometriosis diagnosis to determine how long it took from the onset of their painful symptoms to their actual diagnosis. And what they found was that the average delay in diagnosis for women in the United Kingdom was just under eight years compared to just under 12 years for women in the United States.

And in those scenarios, these were women who were presenting with fairly typical symptoms. And as I mentioned when I went through the different places that endometrial tissue can form or different places that it can grow and develop in the body, many women with endometriosis have lesions in atypical places, places that you wouldn’t necessarily expect. And so their symptoms may fall into the category of atypical. So you can just imagine how much longer it could take for these women to actually receive a firm diagnosis.

One of the things that was really interesting about the study that we’re talking about today is that the researchers themselves were surprised to find that of the 49 women who they interviewed for the purpose of this study, 39 out of 49 of them had not heard about endometriosis as a concept. So they were going to seek support from their physicians for a variety of symptoms, but they had never even heard the term endometriosis.

And so that could be one of the reasons why in this particular study, so many of the women were saying that it was that one doctor who even named the condition that I have and then helped me to find specific support through a specialist, somebody who could really help me with this. And so what the researchers said about that was that this highlighted a significant lack of community awareness and knowledge about endometriosis given it is a common disease affecting one in nine women. So they were saying that they didn’t expect that so many of the women who were eventually diagnosed with endometriosis had no idea of the condition to begin with.

And as you can imagine, many of these women had similar experiences. There’s an interesting stat that 63% of women report being told by at least one physician that nothing was wrong with them. So these are women who went on to receive a confirmed diagnosis of endometriosis. Two-thirds of these women are being told that there’s absolutely nothing wrong with them.

And a whopping 75% of women who, again, have confirmed endometriosis diagnosis were initially misdiagnosed with food intolerances or irritable bowel disease, appendicitis, just a variety of issues or even told that they had a psychosocial issue, right? Like it’s in your head. But that’s three quarters. So before receiving a diagnosis, three quarters of women in a different study were actually misdiagnosed.

And I think a big piece of this when you look into endometriosis, the more you get into the weeds, you realize that it is one of the conditions where many physicians are not well enough educated about the condition itself. So they don’t really know what specific signs and symptoms to be looking for. And I think that’s evident in the research.

So when we think about what does this mean for us as women, what could be done about this issue, I think a big thing is education. As women, we need to educate ourselves about the various conditions. We need to make sure that we are not gaslighting our own selves. So if you are experiencing a variety of symptoms, even if you’re told that it’s in your head, you know that it’s not. And so the key is to keep searching and keep advocating until you find a practitioner who’s willing to listen to you. And also, just to make sure that we are aware, we educate ourselves so that we’re more aware of some of these reproductive health issues so that we can be more informed and potentially be more precise when we’re seeking support from other practitioners.

A couple other interesting facts from this particular study, that “That One Doctor” study. Of the 49 women who were eventually diagnosed with endometriosis confirmed with ultrasound, 21 of the women who were referred to a specialist were initially told that endometriosis was not a cause of their issues. So their specialists dismissed endometriosis as a potential cause of their symptoms, even though they went on to receive a confirmed diagnosis.

And so what the researchers said about that was that the experiences were characterized by a dismissal of symptoms, misinformation, and also a refusal to operate due to the invasive nature or causes diagnosed as physiological. So to put that in layman’s terms, you have these symptoms. You finally found that one doctor who told you, based on your symptom profile, I suspect that you could have endometriosis. And in order to get that firm diagnosis, we’re going to have to refer you to a specialist who would then be able to give you that confirmed diagnosis.

So now you’re sitting in front of the specialist. You have the symptoms. You’re having this conversation. And the specialist is essentially taking a look at you and saying, no, we don’t think it’s endo. I find this to be really, really interesting. This is something that comes up in my FAM practitioner program in a more general sense, where if you’re working with a client and they’ve been told either that they do have a diagnosis of something or they don’t have a diagnosis of something, it’s really important to ask if the client in front of you was actually tested for anything.

It’s amazing to me how many doctors will either diagnose somebody with something or tell them they don’t have it with literally no testing just by sitting in front of them. So you tell me, like, I put on my clothes and I’m sitting in front of you as my physician. You’re literally not testing me, but you’re going to tell me that I either have X condition or that I don’t have X condition. And so I suppose another takeaway for us as women who are seeking support from whether it’s reproductive health issues or otherwise, we really have to stop taking our physicians as gospel, their comments and their ideas, because often we’re being given diagnoses or told you have something or told you don’t have something when no testing was actually done.

So unless this individual has a crystal ball or whatever, we’re just supposed to take their word for it, that they just know by looking at us that we have this condition or not. So I think that was a particularly interesting piece of it because they’re essentially showing that even the women who received a referral to a specialist for the specific condition who literally had the condition, half of them, just under half of them were fully told by the specialist that they didn’t have the condition before the specialist even did any testing. So that’s a really eye-opening stat, I would say.

A couple other interesting information, 22 of the 49 women had these symptoms from their first period. And they say 34 women displayed symptoms prior to the age of 14 and 40 women before the age of 20. So this is really interesting as well. The researchers highlighted this because many women are showing potential signs of the condition even in their teens. And so when we’re looking at that gap between the onset of symptoms and the diagnosis, often one of the reasons that there’s such a long gap is because many of these women were showing signs when they were quite a bit younger. And it just took so long for them to really be able to get to the place where they’re getting the diagnosis.

So another interesting point, there is a gap between when the symptoms present and when diagnosis occurs, where 27 women took longer than six years to be diagnosed, 12 between 11 and 20 years, 12 between 2 and 5 years, and 4 within a year. So you have a variety, some took a few years, but there are several women who imagine it taking two decades before you actually get a confirmed diagnosis of a condition that can be so debilitating.

So one of the interesting things when you look at what the researchers looked at because it’s a qualitative study, so they’re really looking at the experiences of women, which I love because so much of what you look at in research is data, which is also great, but I found this to be really refreshing to actually have someone interested in what women had to say about their experience because it’s so rare.

But what was interesting, one of the points from the researchers was that how much of an impact it made for the women in the study to have somebody who finally listened to them, provided them with a possible diagnosis, like to put a name to the experience that they were having, how much it validated their experiences, especially for women who may have been suffering for such a long time and how many of these women had to go to multiple practitioners for years to actually get someone to take them seriously.

And once the women in the study were actually given that diagnosis, and as I mentioned, most of them had never even heard the name endometriosis before, so it was completely new information for them, they were able to then take control of the process. They were then able to learn about what this condition is. They were able to become more knowledgeable and to actually more effectively advocate for themselves.

And I mean, maybe all of that sounds really obvious to you as a listener of this podcast because of course you’re listening in order to gain more information about whatever variety of topics that you’re looking for, which is why you’re here. But I mean, there’s so much power in that. And that’s what’s robbed of us when we’re going to practitioners to seek support for whatever’s going on with us. And we’re basically being told that there’s nothing wrong with us, that it’s in our head or whatever.

We’re being disempowered because if we can just be provided with the information that we need, putting a name to the condition that we have or the symptoms that we’re experiencing, then all of a sudden we have the opportunity to educate ourselves, to find that correct practitioner who specializes in this issue. They can really lead us to the answers that we’re looking for, to research different ways of addressing it, because of course there’s typically holistic ways to address it, medical ways, and maybe a combination of both for any illness that we have. And it really empowers us to be able to do what we need to do.

So I think if we look at the themes coming from the study, the biggest theme is that as women, if we’re looking for support with our reproductive health issues, we have to be persistent. We have to be more confident about what we’re seeing. We have to not give up. And it’s almost like you have to go into an appointment expecting that sometimes they’re not going to pan out. And sometimes the doctor isn’t going to listen to you. If you at least expect that, it may not be as devastating and frustrating. And it’s sad to think that you might have to plan ahead to have to go to multiple practitioners to get the help that you need. But ultimately, that is many women’s experience when they’re seeking support, especially for reproductive health issues.

There was one part of the study, the heading is entitled, “What Do the Women Want?” And I think that’s interesting as well. Like I said, I love the study because it’s qualitative, because it’s actually looking at what they said about their condition. And what the researchers say is that women wanted to spread endometriosis awareness. They wanted to be heard and they wanted to have their concerns seen as valid. And they also went on to say that a diagnosis helped to give these women a concrete and definitive reason for their historical experience. And it brought a renewed sense of self.

So they went from feeling kind of like they were flailing, not really knowing what was going on, feeling kind of crazy because they keep being told that there’s nothing wrong with them, to actually having a specific explanation for why they’re feeling this way. And it helps them to even just ground themselves.

I do think there can be a bit of a challenge in identifying fully with the diagnosis because from the practitioner’s standpoint, I have had clients who’ve been given a diagnosis of something they don’t meet the criteria for, that they hold on to that diagnosis as part of their personality. I think that there could be pros and cons. Double-edged sword. I’ll leave that there. But with that said, if you are given a diagnosis, it does give you the ability to move forward and the ability to find solutions that you would not be able to even look at without that diagnosis.

Another important point on this topic is that because so many of these women had never heard of this before, many of them were surprised at the diagnosis. And especially when they heard, in this particular study, they identified that one out of nine women have this condition. So it’s almost 10% of us that have this issue. And of course, that’s huge. So imagine 10% approximately of women are dealing with this issue and many, many women have never even heard of it before.

But once they were given that diagnosis, not only did it allow them to seek medical support and additional support within the health realm, they were also able to find community. So one of the issues with endometriosis is because so many physicians are not as educated as they need to be about it, many times women are having to find community with other women with endometriosis and share information about their symptoms, how they were able to find a practitioner, which doctors are most experienced if they’re looking for surgical intervention, those kinds of things. And so it just shows how important it is for women to be heard, believed, listened to, and for us to be provided with the information that we need in order to move forward.

And one thing that can’t be understated is the hope when you finally get that answer of what could have been causing these problems for so many years. It comes with this renewed sense of hope, because now you finally can create a roadmap to really try to turn things around and to have some symptom relief.

Now, for those of you who want to dive deeper into the endometriosis conversation, one of the positive feedback responses that Lily and I have received from our new book, Real Food for Fertility, is how we’ve gone into so many different topics in this book to really equip you with a good view of the various reproductive concerns that could affect you, including endometriosis. So if you have the book already, in Chapter 13, we have an extensive section on endometriosis, the connection between endometriosis and fertility, diagnosis and treatment, and also lifestyle and nutritional factors to supporting relief of some of those symptoms, reducing inflammation, and of course, improving fertility at the outset. So lots of great information in that section, and we hope that it is a great resource for you.

And so with that said, I do think that there is hope when it comes to endometriosis. I think from my perspective, the biggest hope that I have in a lot of these reproductive concerns is in education and empowerment. I always say that if we wait for our medical system, our school system, if we wait for these so-called educators to teach us everything we need to know, then we’ll just be waiting a really long time. So I think it’s up to women to really take ownership of the situation and be the ones that are putting the information out there.

Instead of waiting for someone to magically educate us all about endometriosis, we really have to do that. And I know that many women who’ve struggled with this terrible disease have been at the forefront of empowering other women to learn about it. And every day there’s more information, resources, whether it’s podcasts, research. And who knows, I would love to connect with the researcher in this study. Her name is Nicole Fernley. And maybe there’s a reason why she conducted this particular study. I mean, chances are she either had a personal impact with this illness or someone close to her, because that’s often the reason why we’re kind of focused on what we’re focused on.

And so again, it’s just more of us as women who are having these experiences. It’s going to take us to put that information out there to help empower other women to have a better experience. Of course, that’s my perspective on this because I have no patience to wait for whoever it is, whether it’s educational institutions or medical professionals, to educate and empower. And of course, another huge piece of this would be that there seems to be a need for additional education and awareness. And so I’m sure that there are medical professionals in the field who are working to improve awareness of endometriosis and educate so that women are able to get to that correct diagnosis much quicker.

I hope that you enjoyed today’s episode. If you can think of someone who needs to hear it, the share link is fertilityfriday.com/612. For those of you who’ve been long-time listeners, this is not a surprise. Maybe for some of you who are newer listeners, it’s mind-blowing information. Women just have to suffer so much. And one of the questions I always think of is, why do we have to suffer so much? But a big part of it is education. I feel like that’s the big gap, the big opportunity for us to really fill that gap.

The more that practitioners are educated, the more that they have an opportunity to engage and interact with the latest research and to really understand some of these issues, even if it isn’t their specialty, the more likely it is that women will be referred for the right guidance and care.