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We join Tami Burdick, a patient advocate and the author of Diagnosis Detective: Curing Granulomatous Mastitis. Tami’s story is one of resilience, empowerment, and the quest for comprehensive health care solutions. Join us as Tami shares her journey through the health care system, from grappling with misdiagnoses to advocating for herself in the pursuit of accurate treatment. With her experiences spanning from granulomatous mastitis to endometriosis, Tami offers valuable insights into the importance of intuition, the challenges of navigating health care, and the need for a holistic approach to managing chronic conditions.

Tami Burdick is a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis.

She discusses the KevinMD article, “Women’s intuition in health and healing.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. We welcome back today Tami Burdick. She’s a patient advocate. She’s the author of the book “Diagnosis Detective: Curing Granulomatous Mastitis,” and today’s KevinMD article is “Women’s intuition in health and healing.” Tami, welcome back to the show.

Tami Burdick: Thanks so much for having me back again. I appreciate it.

Kevin Pho: So Tami’s been on multiple times giving a perspective from the perspective of a patient advocate. Go to KevinMD.com/podcast to search for her name, her story, to prior episodes. Her most recent article is titled “Women’s intuition in health and healing.” Now, Tami, for those who didn’t get a chance to read your article, just tell us what this one’s about.

Tami Burdick: Yeah, so it really emphasizes a specific women’s health issue known as endometriosis, but it also correlates with the difficulty in getting that diagnosis. So oftentimes women are really having to go with their intuition and fighting or advocating for their health when it comes to this disease in general.

Kevin Pho: All right, so for those who aren’t familiar with that condition, tell us a little bit about endometriosis.

Tami Burdick: Yeah, so endometriosis can affect one in 10 women typically, and it is a chronic inflammatory disease, basically, of not only the reproductive tract of the female, however it can also really affect the entire abdomen. So sometimes women will get these lesions, say, all over the different organs throughout their abdominal cavity. Oftentimes you’ll see endometrial tissue that’s supposed to stay isolated to the uterus start growing outside of the uterus, and these lesions end up in the abdominal cavity of women.

And then oftentimes they’ll have a variety of symptoms. Painful periods, where their menstrual cycles might be longer, they might be more frequent throughout the month. You might also have significant pain, and not only during your menstrual cycle but other times throughout the month as well, such as ovulation in particular.

So oftentimes women will go to doctors and they’re like, I’ve got these horrible menstrual cycles, yada yada, and they’re overlooked, or some of them might even call it medically gaslit. And it can take years to get a diagnosis of the condition.

Kevin Pho: So tell us some stories. It could be from your fellow patient advocates, about how endometriosis may be overlooked in the exam room. What are some examples of that?

Tami Burdick: Yeah, so I actually have endometriosis, and I wasn’t diagnosed until, I think, 2021. Honestly, I had no idea that I had it. Luckily I had a gynecologist, a new gynecologist that I went to, who wanted to be the one that would initiate some testing just to see what possibly could be going on when I was describing my menstrual cycles to her. Because heavy, painful periods is actually not considered normal, but unfortunately many doctors make the patient think that it’s normal.

So there’s been a lot of women who have gone to their doctor with all of these symptoms and it just gets overlooked, and they might go years and years and years of the same complaints. And deep down inside they know, like, something is not right, something is completely going on here. And they go through this vicious cycle, similar to what I did.

But there’s a lot of women in some support groups that I belong to for the condition who end up having multiple surgeries for this condition. We’re not talking two surgeries, we’re talking seven or eight surgeries. And that’s when you have to take a step back and be like, why is this? Because I mean, really there is no cure for endometriosis. It can be better managed. But if you’re having to have all of these surgeries for one condition, we need to take a step back and think, OK, what could possibly be driving this process, that this patient has to keep having all of these surgeries?

And there are a multitude of causes, and I think that’s where we fail in the health care community, is really taking a step back and thinking, OK, what can we do to see what could possibly be driving this process in this individual? Because there are tests available. There’s some great podcasts out there. I know Dr. Mark Hyman has one that I actually referenced in my article.

Kevin Pho: So I know you can’t speak on behalf of your medical team, but can you speculate maybe on some reasons why the medical community sometimes overlooks this diagnosis?

Tami Burdick: Yeah, I think oftentimes it’s overlooked as it’s just part of your menstrual cycle, or it’s just part of being a woman, and it’s supposed to be accepted as something normal. But it’s not normal to have these painful menstrual cycles, or to have significant pain multiple times throughout the month.

And a lot of these doctors, unfortunately, from other stories that I’ve read about or I’ve heard about, women have experienced this and they keep experiencing the same problem. And we have to get to a point where we realize that this isn’t something we can make normal anymore. We shouldn’t be normalizing this. We need to really listen to the patient and get to the bottom of why these symptoms are present, because symptoms are a way of our body communicating to us that there’s a problem. It’s up to the doctor to work with the patient and try and figure out what that problem is.

Kevin Pho: Now, if patients find themselves in a situation where they feel like they’re being gaslit, or they feel like the doctor is putting them through all these procedures without a clear path forward, just tell us some of the options patients have in these situations.

Tami Burdick: Yeah, so my doctor in particular, we started with a transvaginal ultrasound, and she said that’s where we’re going to start, that’s like our starting point. And then from there we’ll see what it might tell us. It may not tell us anything, and from there we might have to do additional testing.

There are a lot of different testing methods. Sometimes it may take laparoscopic surgery in order to identify endometriosis. In my case I was able to get diagnosed via transvaginal ultrasound in conjunction with an MRI. So the transvaginal ultrasound detected an endometrioma, which is a very specific type of cyst that is normally seen in conjunction to endometriosis. But to really support that, or be more confident that that’s what we were finding, we went ahead and did an MRI, and the MRI results were supportive of what was found in the transvaginal ultrasound.

Someone will get CT scans, they might even get scoped in different ways, and like I said, the laparoscopic surgery is what oftentimes some women will have to have to identify the condition.

Kevin Pho: In your article, you mentioned the role of women’s intuition when it comes to this diagnosis. So talk more about that.

Tami Burdick: Yeah, I would say women’s intuition in general is something that most of us are blessed with. I’ve used my intuition in many circumstances throughout my entire life, my personal life, my health, work. But if you feel that something isn’t right, or you suspect something’s wrong, there’s no reason why you can’t really seek out what your body is trying to tell you.

And it’s not only with endometriosis that we might feel this inner voice or this intuition that we have. Even with me taking a step back, when I had granulomatous mastitis, I knew that this disease just wasn’t happening on its own. I knew there had to be something that was driving that disease process. And it might have been a monumental task to figure it out, but I did, and I listened to my intuition and did my research, and we finally got the answers that we needed.

And I think that’s important with anything that we’re going through. Even with endometriosis, if you feel something’s not right, if you feel something’s wrong, there’s no reason why you shouldn’t seek out why that is. I mean, your symptoms are valid, right? They’re there and they’re real. But it’s trying to convince your doctors to understand and respect the same thing that you’re feeling.

Kevin Pho: So I know that you’re an active member in various patient communities. Talk about some of the advice that you’re reading in these communities. Take my audience into these communities, and what are these patient advocates talking amongst themselves when it comes to getting their health care clinicians to listen? Or if their clinicians aren’t listening to them, what they should do next? Talk about some of those discussions.

Tami Burdick: Yeah, so in a previous article I talk about my A+ list to advocacy, so definitely check out what that is and the details that are around that. But oftentimes what I’m really seeing in a lot of these support groups is a lot of the repetitive information. It’s, I’ve gone to my doctor, told them about all of these symptoms, all of these things that I’m feeling or that I’m seeing, and I just don’t feel like I’m being heard. And it might be, well, you can try this birth control pill, or maybe you can change your diet a little bit, or maybe you could try this drug for XYZ amount of time. And those are really Band-Aids. Why don’t we try to figure out exactly why these symptoms are there, instead of trying to Band-Aid the problem?

And it’s really frustrating. Frustration would probably be the number one word that I would use when it comes to women in endometriosis, or women in adenomyosis. That’s often a separate condition that’s seen in conjunction to endometriosis. And there’s a lot of women with PCOS that experience these similar symptoms.

And it’s getting to the root causes. And I think that if we take a step back further and try to identify what is driving all of these symptoms, what is driving the disease process, that maybe we can get ahead of things and maybe we can end up helping a lot more patients better manage the condition.

Kevin Pho: Now, speaking as a physician, there are sometimes cases, and not just endometriosis, but as you know, there are a variety of cases where physicians simply don’t know, or there is no clear path forward, and that may involve some cases of trial and error. Like you said, try this, see how it works or not, and come back in a few weeks, we could talk about next steps. So in those situations where there is not a clear path forward, how do you advise us clinicians in terms of how to communicate that uncertainty with patients?

Tami Burdick: Yeah. If the uncertainty is there, as a clinician, what can the clinician do to help bring more certainty to the matter? It’s a guessing game if you’re just prescribing all of these different prescriptions. We need to find out why those symptoms are present, and the only way to find out why is to do testing. So if they aren’t doing testing, that could potentially be a big problem. Because wouldn’t you want to know exactly what the patient is dealing with before you try to prescribe all of these different drugs?

Kevin Pho: We’re talking to Tami Burdick. She is a patient advocate. Her book is “Diagnosis Detective: Curing Granulomatous Mastitis.” Today’s KevinMD article is “Women’s intuition in health and healing.” So Tami, as always, as we come to the end, tell us some of your take-home messages to the KevinMD audience.

Tami Burdick: Yeah. Use your inner voice. If you feel something’s wrong, if you feel something’s not right, listen to your intuition and follow that. And always be your best advocate. Being your best advocate is going to help you with everything in life, not just your health, but your career, your family, your friends.

Kevin Pho: Tami, thanks once again for sharing your perspective as a patient advocate, and thanks again for coming on the show and sharing your story and insight.