Episode 28: Dolly Parton, Endometriosis & Receptiva

Dr. Klimczak and Dr. Reed discuss how Dolly Parton is bringing awareness to endometriosis. They talk about what endometriosis is, how it develops, the problems it causes, and how to treat it. They also discuss their opposing views on the Receptiva test.

Transcript

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hi, I am Dr. Beverly Reed and I'm Dr. Amber Klimczak and we are Two Peaks in a Pod. Well, hi everybody. Welcome back. We've actually had a couple weeks off from podcasting because we've been on spring break. I know, it was so nice. Yeah, did you have fun on your trip? Oh my gosh, so fun. So everyone out there listening, Dr. Reed So nice and covered the clinic for me while I was gone and she did a really good job of taking care of my patients. Thank you. It was wonderful. I came back and I saw some plans. I was like, Ooh, nice plan. I'm like, okay, good idea. I'm glad we did this Well, thank you to Dr. K too. She also covered for me. We got to split spring break, so we both got to go, have a little bit of fun and um, it was nice that I did miss you guys and I miss work too. So, we're back. That's good. You're like, I didn't miss you. Makes it worse. No, I'm just, I've never heard someone say they miss Rick while they're in Turks and Caicos. I, well, I just think about it all the time, but I really try to, you know, just focus on my family and everything. But it's really hard. I can't help but wonder, like, what's going back there and all the rest of it, so it's hard. Um, okay, so you know how I usually bring up a celebrity and most of the time you don't know who this celebrity is because you're not up and trending with all the young people. But I have a celebrity visit that I think even you may know. Oh yeah. And this is Dolly Parton. Oh my God, love her, love her, love her. Live my life by her. I figured you would. Okay, Dolly Parton, she, I didn't really know actually that much about her. Of course, I know who she is. But, um, a lot of times, even these days, they bring up a lot of her like older quotes and everything. And I will say, I love her quote about blondes. Have you heard that? Tell me. They, um, I guess the Some kind of news reporter, somebody said, does it bother you when people say blondes are dumb? Mm hmm. And she said, well, no, it doesn't bother me because I know I'm not dumb and I'm also not blonde actually. That's so funny. That is my life quote there. I'm just saying. That's hilarious. I like the quote, the higher the hair, the closer to God. Um, so I'm surprised because I actually had not heard this about Dolly Parton before. So she came out and she actually said that she had suffered depression after being diagnosed with endometriosis. And she ended up actually going, undergoing a partial hysterectomy back in 1985. And then she went on to share during this interview about the impact that her severe symptoms had on her physical and mental well being. And so I, this is the first I'd heard of that. And of course my heart really went out to her, especially because people forget that When you're famous, it doesn't mean you're immune to having common medical issues or problems. And I just tried to imagine how hard that must have been, you know, with endometriosis, for example, you can have severely painful debilitating periods. What if that was going on when she was about to give a show or something? You just have to do it. Yeah. You have to put a smile on your face and just get out there and perform and pretend like that's not going on. And so I was really surprised to see that. And so I thought maybe we could talk about endometriosis today. Yes. Yeah. I do think endometriosis is a topic that's becoming just more, there's more awareness I think in just celebrities and Hollywood and news, you know, I feel like they're always doing specials on endometriosis and everything. So the good thing is I think there's more and more education about it as opposed to even, you know, 10, 15 years ago, I think people didn't really take women seriously when they were complaining about chronic pelvic pain. You know, there's a lot of them. I think more acceptance and understanding. Yes. Yes. Yeah. So first let's just talk about what is endometriosis and endometriosis means that little bits of the lining of your uterus. end up in other parts of your body that they're not supposed to be at. So for example, they, these little bits can implant on the ovaries on or in the fallopian tubes in the pelvis. Those are probably the most common areas that we've seen, but sometimes really aggressive endometriosis can even get into the bowels, the bladder, and, um, Um, and some other surprising body parts too. So sometimes you can even get endometriosis along your diaphragm, in your lungs, in scars, in the vaginal area. So I've definitely seen some odd places for endometriosis to end up. And, and so we kind of use that information to try to help us figure out how could somebody end up with endometriosis in the first place, right? Right. Yeah. I think it's really strange that men can have endometriosis. Oh, I didn't know that. And women who haven't gone through puberty. I think those are some of the other strange things. Yeah, so we kind of think of, okay, what's causing this? Why would you ever get these little cells that should only be bleeding and shutting their lining coming out your uterus like a normal period that you're used to in other places, right? So those cells, they bleed, they cause pain wherever they are. They can actually be like invading into the nerves where they are and causing pain. But how do they get there, right? So, um, One of the obvious thoughts was, okay, well, you're bleeding down through your cervix. We kind of know what our anatomy looks like, right? You have your uterus, you have your fallopian tubes. You're supposed to bleed out, down through your cervix, out your vagina, right? Well, they thought, okay, you can have some bleeding that's going back out through your fallopian tubes and kind of spilling out and seeding these little cells all throughout your ovaries, your fallopian tubes, and your pelvis, like Dr. Reid was saying. And then they stopped. sit there and they cause cause pain and bleeding e your cycle. Yeah. Um, I j I was, you know, a med st my general surgery rotati learned is that any type irritating to the peritone And, um, and so that's why oftentimes people would know if there was some kind of surgical emergency coming in because the person would be kind of doubled over in severe pain and then they would be able to diagnose that that person had what's called an acute abdomen, that they were, um, had some kind of bleeding going on on the inside. But imagine if you're a woman with endometriosis and you're having that happen every month where that blood is spilling back through the fallopian tubes and it's sitting in the pelvis. And what's interesting, I will say is some women don't really have any symptoms from it at all, but some women it's very sensitive, very painful. And also your immune system gets involved. Your immune system says, wait, that's not supposed to be there. And it starts making all these inflammatory cells and starts. attacking these endometriosis implants and everything. Um, and so it really creates an unfavorable environment overall. Absolutely. Yeah. But I think what's interesting is that predominant theory of retrograde menstruation causing endometriosis. And that's what I, you know, do believe. Likely causes, most of it doesn't really explain how or why endometriosis can happen in some of these other cases, like you brought up, how could, how could it happen in a man? Or how could it happen in somebody who's never had a period, or how could Mitchell pled end up in your lungs? Right. Right.'cause how would Mitchell Blood get up there? So, do you wanna talk about one of the other theories? So there's two other theories. behind endometriosis and these are maybe a little bit more specific. So, um, but one of them is called lymphovascular spread. And so basically the thought is that these cells are basically getting transported through our, our systems like, um, blood and lymph systems, and then getting deposited other places in our body, like the heart. Spreading to the lungs, right? It's somehow getting into these cells, being transported around, getting spreaded. The other one is called selenic metaplasia, and that's kind of just a fancy word for a change in a cell to a different type of cell, right? So the, um, basically the outer layer of, um, the peritoneal cavity and these other things is getting changed from the type of cell it should be to the type of cell that would be present in the inside lining of the uterus. that would bleed and shed each month from a period. So those are kind of these two other, probably lesser known theories, unless you're a gynecologist, right? And you study this, um, but ideas as to why you can have endometriosis in bizarre places and, you know, not really the expected sites. And I've had a couple of cases that I've seen over the years. So one of them I saw was in a C section scar. Um, and then I have seen, um, endometriosis in the vulva area as well too. So, um, So I've definitely gotten to see some firsthand experience, um, of it popping up in places you just wouldn't necessarily, um, expect. So, okay. So let's kind of talk about one of the hardest things with endometriosis. How do we diagnose endometriosis? You know, with so many of the fertility conditions we look for, it's easy. We may have a lab test that we can run on you. We may have an imaging test we can run on you to identify this. But endometriosis is sneaky. It is very hard to diagnose. And so, um, we have kind of the gold standard is what we call it, the way of diagnosing it. And that is actually pretty invasive. That is to do a surgery, to actually look inside of the pelvis, to look for endometriosis implants. And you have to take a biopsy of those implants and send it off to the pathologist. And that is the gold standard way of knowing. Do you or do you not have endometriosis? But the hard part is we don't want to put patients through surgery. Who wants to sign up for that? I know, I don't have any patients that are like, Sure, I'll go to surgery just to figure out if I have endometriosis. Yes, yes. Which I will say too, like, this is something that's really changed over the years. Probably 20 years ago, they did do laparoscopies on all the patients that were having fertility problems because they didn't really have a lot of other ways of diagnosing it or of treating it. And so the thought is, hey, if you have somebody you're not getting answers, just do laparoscopy. But really these days, I really try to keep my patients away from surgery as much as possible. And so even if I suspect they may have endometriosis or even if I'm completely missing it, I try to Sometimes it doesn't really change your treatment plan anyways. And, and we can kind of get into that later, but, um, but this isn't something that you would routinely, um, ask your patients to do, right? Right. I, and because, you know, I trained in a time where we really did not take women to the OR and do a laparoscopy just for that reason. Um, the reason that we may consider doing that is. You know, for other reasons, you, we know there's something there or you're having severe pain and you want to try and have a surgery to maybe remove something, but not necessarily just for your fertility, are we taking someone back to diagnose it? Yeah. So if we're not going to do surgery, Do we have any other ways of knowing that somebody may have endometriosis? Yeah, well first of all to anyone listening that might think that hey, I think I've always thought I have endometriosis You know, we want you to know that we also believe you and I think it cannot be Underestimated to just talk to your patients and listen to your patients. Yeah Because a lot of times patients are highly accurate when they tell me there's a classic triad of endometriosis, right? That we listen for and oftentimes they're right, right? So my first step is always just listening to my patients. Are you having extremely painful periods? Are you having pain during intercourse? You know, are you now seeing me because you're struggling, struggling to get pregnant? Those are all signs of endometriosis, which You know, often are correct, but there's other things that we use, especially as infertility specialists, like our ultrasound. We do ultrasounds pretty much on every single patient that we see. There are certain types of cysts that can occur when you have endometriosis. And remember, we talked about those cells, they can be present on the ovary. And when they bleed, they kind of get stuck inside, trapped, and it causes like a big cyst. Cyst inside your ovary. We call it a chocolate filled cyst or an endometrioma. And that is kind of a dead giveaway that someone has endometriosis, right? And so finding an endometrioma on ultrasound, there's, there's some things that we just from experience can look at and say, yeah, this is an endometrioma. When we see that, we say, yeah, you probably have endometriosis. So that's probably my number one way that I diagnose people now with our modern technology. And I know Dr. Reed has, you've kind of investigated some of these other ways to look for adhesions and things, right? I am really into this concept of dynamic ultrasounds. So, a lot of places maybe, because as you mentioned, we do all of our own ultrasounds, and I do love that. Because, If somebody else is doing the ultrasound and you're just looking at the still images, you're not getting as much of a sense of what's going on when compared to you having the ultrasound probe and looking through. And so there's actually all these different things that you can really try to be very detail oriented and pay attention to, to see if there's these hidden Signs of endometriosis because I will say I was always trained actually you can't see endometriosis on an ultrasound And that is true in that you usually can't see those tiny little implants And of course with the exclusion of how you mentioned the seeing the endometriosis That would be obvious some ultrasound, but I'm talking about somebody who doesn't have endometriosis We're always told you can't diagnose that on ultrasound, but now I'm learning actually And part of this is through some additional studies that were published that there are certain signs that you can look for. So for example, when you put the ultrasound probe in, you can look for something called sliding signs. Sliding sign means you're paying special attention to the uterus and the intestines. Do they slide easily like this back and forth, or do they seem stuck in place? If they seem stuck in place, you're wondering why are they stuck in place? Is there endometriosis there? Is there scar tissue there? And things like that. I'm also paying attention to the patient's comfort level during the ultrasound. If I'm putting the probe in and I go to a certain spot and she goes like that, I'm like, okay, she's a little tender there. Usually somebody would not be tender there. Could she have some endometriosis there? I'm also looking for signs of scar tissue. Now, if somebody is, if it's just a normal ultrasound, it's hard to see scar tissue. But a lot of times, as we mentioned with endometriosis, you may have backflow of, um, that fluid into your pelvis, that blood into the pelvis. And that blood really kind of lights things up. And so sometimes you can see bands of scar tissue adhesions, um, there. And when I see that, then I'm like, well, why would they have scar tissue? Endometriosis. Um, and then finally, you can also look and sometimes you can see little nodules of endometriosis if you're, if you're looking at the right spots of it. So for example, endometriosis loves to live on something called the utero sacral ligaments. And you can see those in ultrasound. And so if you see kind of dense little circles over there, it also can be another hint about, um, endometriosis. So I've kind of been fascinated, um, as I've learned more about this over time. Um, and, and so especially in a patient who. We're just not getting any answers. I'm really trying to just dig for any details and I'm sure the patient in the moment is just like, what are you doing? What are you seeing? It may not see that there's much on there, but it's more of looking for that emotion and the comfort level during, um, during the ultrasound. So. But as the hard part is on the ultrasound you can't really see the fallopian tube So do you want to talk about how we can assess the fallopian tubes and maybe suspect endometriosis that way? Yeah, um, so we've talked about our common testing for fallopian tubes that we do It's called the HSG or the hysterosalpingogram sometimes called the dye test Remember, this is where we do an x ray and we push some dye up through the cervix It goes through the uterus and it's mixed fills out through the flipping tubes. If the tubes are open or closed, tubes should be able to kind of move freely about your abdomen if, um, they haven't ever had any scarring or damage to them. And so it's pretty evident when we look at them and they look at like they're kind of a normal or what we call anatomic scar. state. They're sitting where they should. Every once in a while, fallopian tubes can kind of look like they're out of place, right? They look like they might be stuck in a certain spot. And sometimes when we put the dye into the tube, it goes out the tube, but it stays in a little pocket. And we call that loculation. And it's like, something's blocking the Die from being able to freely flow out, just go throughout your pelvis, go throughout your abdomen. And usually, that's adhesions. Something is kind of scarred around and making a little pocket where the dye just sits. And we can see that really nicely on an x ray. And that makes me suspicious of adhesions in the pelvis, going along with this picture of endometriosis. Yes. And I would add to you and maybe another dynamic sign almost is looking for pain during the HST. I know that, um, we do our HSTs in a way to really reduce as much pain as possible, but if it does seem like somebody is having more pain than the average person, again, it makes me think, okay, could this be a hint or sign of endometriosis? Um, and then also too, when we're looking at the uterus as it's filled with dye, most of the time it should be kind of in the middle of the patient's pelvis. But sometimes you'll see it pulled over severely to one side or the other and, um, and that would make me think, Oh, do they have some kind of scar tissue pulling the uterus one way or the other? And that could also be, um, related to endometriosis. Um, so, but here's the thing is sometimes patients can do all these tests. They can do an ultrasound, they can do an HSG, everything may be coming back normal. And they say, have endometriosis. I don or symptoms you've never anything. But could you s Absolutely. And it's hard patients will say my diag know, and it's hard becau like something bad has ha missed. And it's like, yo I mean, it is good to have all of the information, but also a diagnosis of endometriosis in modern fertility doesn't really change too much in terms of like what you would initially do to treat it anyways. And again, we'll get it into that part. Um, here in a minute, but I did want to bring up one controversial test. Um, and this is a test called receptiva. And this is interesting because Dr. K and I usually agree on so many different things, but Dr. K is actually a world famous published author on a study that has an opposing opinion from me on this. And so I thought we should bring it up and hash it out a little bit. So, um, so, okay, receptiva is a test that looks for a molecular marker expressed in the lining of the uterus called BCL6. And the person who sells the receptiva, um, test feels that having an increased level of this marker is associated with endometriosis. And treatment of this marker could result in better chances of getting pregnant and lower chance of miscarriage. And, you know, before I knew that Dr. K was a world expert on this, I had dabbled with this test and I just coincidentally had good experiences with it where I've, you know, just had patients, we couldn't figure out what's going on. We do the test and we treat and then they have baby. And these are called anecdotal experiences. This is not an official research study or anything. But it's kind of hard when you've had that to accept that it may not be the case. And so I'm a little more attached, I think, um, to the Receptiva test. But Dr. K has had some, um, personal experience actually doing the test herself, um, actually performing the test. And do you want to share what you found? Yeah. So, you know, caution to all people out there listening. Always be aware of new tests that are introduced into the fertility world. And if your doctor is trying to get you to do a lot of testing, you should ask, how was this test validated? Can you tell me a little bit more about this? Because there's always someone trying to make money in medical field with devices and tests and everything else like that. So you want to make sure that whatever test is going to be done to you has been validated. Make sure you really understand why it's being done. That's really not necessarily applicable to receptiva. It's usually very. It's not invasive. It's a safe test to do. It's not going to harm you in any way. But every once in a while, these tests can harm people. So ask more questions if it's a new test. Um, but I'm always suspicious for that reason of new tests coming into the fertility world. So what we did for this particular BCL six test is we tried to first of all, just replicate doing it. Um, and so the way that this test is done is with immunohistochemistry. That's a fancy word for essentially using staining, um, with antibodies to stain and see is this molecule kind of there or not. And my experience with immunohistochemistry is, it's very challenging to do. And you can kind of find whatever answer you're looking for when you do it. So I do, um, anytime I'm reading papers where most of the data came from, um, immunohistochemistry, I always have like a little bit of a light in the back of my mind going off, like, how accurate do I really think this is? Because it's, I, I think it's very difficult to replicate those things. Um, and I'm not sure that it's extremely sensitive and specific for what we're looking for. Um, and so definitely. Receptiva should be used in the patient population that they're really saying it should be used for, and that is the unexplained infertility population. So that's the first thing. Um, unexplained infertility means you went through all of your testing, can't really figure out what's going on, and that is how Dr. Reed has been using it on her patients, right? She's trying to just test something else. And the unexplained infertility population is much more likely to have endometriosis. We know that with certainty. Okay. And so there's something called a positive predictive value of a test. And the more prevalent of disease is in that population, the positive predictive value is going to go up. Okay. So if you are not part of the unexplained infertility population, and you try and apply this test of receptiva to you, your likelihood that you get a false positive is high. So it really should only be applied to the population that they're telling us it should be unexplained infertility. So if you're going through your tubes are blocked, you have PCOS, you have male factor, things like that, probably shouldn't be doing receptiva. Okay. It's just not who it's indicated for. So that's the first thing I would caution. Um, and the second thing is it's, it's just. It's something that we need to investigate more. I would like to see another group come out with really strong evidence that doesn't have money in the game to say that it's working, right? I want a third party to agree. Cause I haven't seen the test really replicated. Um, that's what would be, that's what would be convincing to me. It's really nice. Everyone wants a test for endometriosis that really just involves a biopsy of the lining of the uterus. We don't have to take our patients to surgery, but fundamentally. Also, even you guys listening can understand this, endometriosis is the presence of glands and stroma. outside of the uterus that should only be present in the uterus. And we're doing a test on the inside of the uterus to diagnose that. I have a really hard time with that. Just in the basics, the fundamentals of it. You know, there are markers. These, these cells, this is a marker. It's an overexpression. So it's expressed in everyone. So what's, overexpression. We're not really sure. So there's a lot of gray areas and I think we should investigate more things. You know, um, it's a really exciting field. We need to figure out an easier way to diagnose with endometriosis. Yeah. And for those big nerds of y'all, like me, I would encourage you to look up Dr. Klimczak's paper on BCL 6 as well as the back and forth between the inventor of the test, between Dr. Klimczak and the test. Because here, it's kind of funny, like in the literature, it's usually pretty dry, right? This was some drama going back and forth in between the two. I felt like I was watching like a good, I don't know, um, a good fight in between, you know, because Dr. Klimczak had her study that, you know, disproved the test and then the inventor of the test said, no, you know. You didn't do the test like we do. And then I said, wait, it doesn't matter. We, it's this back and forth. It's really actually interesting and good at hand. Um, and so it definitely made me think, and here's one of the things that really made me think about is I had gotten so attached to the fact that I've had all these patients that have had babies after they had a positive test and we did the treatment and I said, well, what is an explanation that could make sense with Dr. K's data and with this other, the inventor of the test data, because they both have And I said, you know what? Maybe it's really not about the test, but about the treatment. So the treatment that I give is Depo Lubron, which is hormone suppression for several months. Um, and I usually give letrozole as well before I do the embryo transfer. And I was doing this on people who had a positive receptiva and then they would suddenly. have a baby when they had struggled before. And then I thought, well, what happens if we gave this treatment to somebody with a negative BCL 6? Maybe it would help them too, you know? And so I definitely agree that I think there's more for us to know and more for us to learn about. And so you have some really good points and I'm glad that you were there to help us figure it out. Okay. So I think we're running short on time. We might have to just talk about treatment pretty quickly. Um, so let's say a patient, um, had a laparoscopy and they came to you and they said, you know what? They told me I had mild endometriosis. What should I do? What kind of treatment would you recommend? The first question that you really want to ask yourself and what your doctor is going to ask you is what are your goals, right? Do you want to get pregnant or do you not want to get pregnant? If you're not looking to get pregnant, we're going to try and quiet down your endometriosis as much as we can, um, for treatment of your pain. It's usually just NSAIDs, things like ibuprofen, Tylenol. Okay. Um, and then if you are open to it, we usually try and put you on some sort of hormonal. birth control pill, um, to suppress all of those lesions and basically make them quiet. I like a nice continuous regimen birth control pill. That means that you're not really taking those placebo weeks. You're just on it all the time. Um, and the idea is we kind of shut everything down. Estrogen is basically the fuel for endometriosis and it makes it grow and get inflamed and you're miserable. So we would just want the least amount of estrogen feeding those lesions as possible. So we put you on a nice continuous birth control regimen And usually people have relief from just that. Um, this is called medical management of endometriosis. Um, typically if you don't respond to that, we have some bigger guns that we can use. Um, Dr. Reid had mentioned Depo Lupron. That's an injectable medication that you can do actually every three months. Um, and that really shuts down these lesions. It basically kind of shuts down your brain from even talking to your ovaries and everything gets really nice and quiet. You do have to do some other medications to protect your bones during that time. So we usually add on like a little bit of hormones so that your, um, bones don't, you know, basically get enough stimulation from a small amount of estrogen. Um, so you don't, You're not at risk of osteoporosis or anything, um, but Depo Provera is kind of the next level up, and now there's even Orlissa, which is a GnRH antagonist, which is a pill similar to Depo Lupron, but a slightly different mechanism, um, with not as many side effects and seems to really be offering nice treatment Well, and I think it was when you brought up birth birth control pills have your risk of getting endo are those cysts that dr K us about earlier. So impo Oftentimes you may even need to get them surgically removed and that can damage the ovaries. So we really want to prevent our patients from, um, forming those. And so, yes, if you're not trying to get pregnant, it is good to do everything we can to suppress that endometriosis for sure. Um, and then when does she want to get pregnant? So, if you want to get pregnant, totally different train of thought, right? We can't put you on birth control pills, that would, that would be an issue. Yeah. Um, and for endometriosis, definitely are more challenging fertility patients, for sure. Um, and so, ultimately it lies in what are the reasons why you're really struggling to get pregnant with endometriosis. And there's kind of two things. You have problems with the anatomy. Remember we said you're, Your fallopian tubes might be kind of glued and scarred and not really functioning as they should and often the head quality is really not so good. And so, while I always try and offer my patient, patients, they know this, I tell every patient this, this is my goal as your doctor, the least involved, least invasive, least expensive treatment option, right? A lot of times those lower level options don't really work well for endometriosis, things like ovulation induction, like super ovulation and inseminations. And so often we do end up doing IVF for these patients. I think that that's the most successful treatment that I experienced for my patients with endometriosis. It doesn't always mean we have to go straight to IVF. I'm always willing to try some of the lower treatment options, but ultimately it does seem to be the most effective and the quickest time to pregnancy. Yeah, and I think it does depend on how severe we think that endometriosis is. If you have severe endometriosis, straight to IVF is really what I'm going to recommend for you, and I'm not going to jump to IVF quickly, but, but if I know it's severe, let's not waste our time. Um, if it is mild endometriosis, I think both of us are fine with trying some IUIs. You don't want to keep trying forever, maybe try up to three IUIs if it works great. If it doesn't, move on to IVF as well. well. But you know what? This is kind of what we would recommend for any patient, even a patient without, um, endometriosis who had unexplained infertility, we usually recommend trying up to three IUIs and moving IVF. So that kind of circles back to when I was talking about, would I want somebody to undergo a surgery just to find out if they had endometriosis or not, when ultimately it doesn't change the plan, then that's kind of why we, um, sometimes, I wouldn't say miss the diagnosis, but are always considering it as a possibility in certain patients. But. wouldn't really change our, our treatment in that way. Okay. Should we wrap it up? Yeah. Great discussion on endometriosis. Yes. And I'm glad you got to talk about Dolly and everything. So, all right. Bye guys. Have a good weekend. Also leave us a good review if you have a minute. Thanks. Bye