Endometriosis Diagnosis Delay: Why It Takes So Long (Episode 514)

Full Transcript: Episode 514

Lisa Hendrickson-Jack:

Today I’m sharing a brand new episode in my FAM Research Series. In today’s episode, we are going through endometriosis and the issue with diagnosis. There is a really, really interesting paper that I found. It’s a qualitative study called “That One Doctor: Qualitative Thematic Analysis of 49 Women’s Written Accounts of Their Endometriosis Diagnosis.” And that is what we’re going to be going through today.

The reason that I find this study so interesting is because it looks at the qualitative data. It’s actually looking into what is it that women are saying about their experience with diagnosis. Why does diagnosis typically take so long? And what could we possibly do to improve that? What really comes out of all of this dialogue? So really excited to dive into this with you. And without further ado, let’s go ahead and jump right in.

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.” And of course, if you want details about it, you can head over to fertilityfriday.com/514 and we will have the link and you can take a peek at the abstract and all that great information there.

But what was really interesting — the reason that they titled the study that, “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, 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.

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 the 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 a 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.

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, okay, so what does this mean for us as women? What could be done about this issue? I think a big thing is education. So 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.

So a couple other interesting facts from this particular 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 myths, 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.

And what’s really — 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. You tell me, 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 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 — whether it’s reproductive health issues or otherwise — we really have to stop taking our physicians’ comments and ideas as gospel, because often we’re being given a diagnosis or told we have something or told we don’t have something when no testing was actually done.

A couple other interesting pieces of information: 22 of the 49 women had these symptoms from their first period, and 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 definition. There is a gap between when the symptoms present and when diagnosis occurs: 27 women took longer than six years to be diagnosed, 12 between 11 and 20 years, 12 between two and five years, and four within a year.

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 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, 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 — once they were given that diagnosis, 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.

There was one part of the study — the heading is entitled “What Do the Women Want?” — 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 — and it helps them to even just ground themselves.

Now, I do think there can be a bit of a challenge in identifying fully with the diagnosis. I have had clients who’ve been given a diagnosis of something they don’t meet the criteria for, but they hold on to that diagnosis as part of their personality — so that can be double-edged, 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: 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, that it was one out of nine women who have this condition — so it’s almost 10% of us that have this issue. And of course that’s huge. Imagine 10% approximately of women are dealing with this issue, and 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 communities. 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.

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 road map to really try to turn things around, to relieve some of those symptoms, 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. You can find it on Amazon — Real Food for Fertility — and of course our website, realfoodforfertility.com, if you want more information about the book or to grab the first chapter for free.

So with that said, I do think that there is hope when it comes to endometriosis. I think 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. 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. 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 focused on what we’re focused on.

And of course, another huge piece of this would be that medical professionals — 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.

So those are my thoughts on this study. I hope that you enjoyed today’s episode. And like I mentioned at the top of the episode, if you’re wanting to find the study and have a look at the abstract or have a read through, head over to fertilityfriday.com/514 and I will link the article there. You’ll also find more details about endometriosis in Real Food for Fertility. So with that said, I hope you have a wonderful week — whenever you’re tuning into the show — and of course, as always, until next time, be well and happy charting.