Endometriosis Causes Abdominal Pain, Bloating & Constipation

Unpacking the warning signs, symptoms, and best treatment options with Dr. Jandra Mueller

As a pelvic floor physical therapist, Dr. Jandra Mueller digs deeper into the root cause of chronic pelvic pain. For some women, it’s explained by endometriosis—an inflammatory condition where endometrial-like tissue lives outside of the uterus. Other symptoms of endometriosis go beyond the pelvic floor, causing painful periods, gut health issues, infertility, and more. While getting a diagnosis for endometriosis is often complex, Dr. Mueller simplifies what women can do to determine if it is driving their symptoms. 

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Intro:

Welcome to Dr. Ruscio, DC Radio, providing practical and science-based solutions to feeling your best. To stay up-to-date on the latest topics, as well as all of our prior episodes, make sure to subscribe in your podcast player. For weekly updates, visit DrRuscio.com. The following discussion is for educational purposes only, and is not intended to diagnose or treat any disease. Please do not apply any of this information without first speaking with your doctor. Now, let’s head to the show.

Dr. Ruscio, DC:

Hey everyone. Today I spoke with Jandra Mueller, and we went into the topic of endometriosis, which might be underlying some non-responsive symptoms, including infertility, painful periods, and also non-responsive constipation, IBS (but probably with a lean toward constipation), distension, and pelvic pain. So this is kind of the short list of symptoms. And we discussed what factors to look for that may indicate that endometriosis could be what is leading to some of these non-responsive symptoms. And one historical factor to think about is if you’re on, or were on for a long period of time, birth control, because you had painful periods and/or heavy bleeding, that’s also one historical factor that can be helpful. So we outline this a bit more in attempts to help women understand where some chronic and non-responsive IBS, constipation, distension, pelvic pain, infertility, and painful periods might have come from, back when one started on birth control or at current.

Dr. Ruscio, DC:

And this is something that apparently can evade diagnosis. I believe she had said the average time to diagnosis is six years. So of course I’m hoping with this conversation, we help you to better see and recognize when an investigation for endometriosis might be pertinent. And also, she provides some resources for websites that aggregate referral sources. So a very insightful conversation with Jandra Mueller, per the normal. She has been on the podcast in the past. She is a pelvic floor PT, and she is who our clinic refers to, her and the clinic (which has a number of locations) that she works for. And they practice this holistic model of pelvic floor therapy. And also remember that if you are trying to navigate how to improve your health, especially your gut health, which does have this bidirectional relationship with endometriosis, one of the interesting things that came from our conversation was that endometriosis might cause or be caused by bacterial dysbiosis and leaky gut. So, the two resources I would point you to would be our clinic, A, and then B, Healthy Gut, Healthy You, so that you can start moving down this path of improving your health. And how endometriosis would tie into this would be, you’ve made some improvements, but there are still some lingering and non-responsive symptoms that could potentially then prompt an investigation for endometriosis. Alright guys, and with that, we will go to the show. Thanks.

Dr. Ruscio, DC:

Hey everyone. Welcome back to Dr. Ruscio, DC Radio. I am here with Jandra Mueller. I was mispronouncing your name last time you spoke, and I said “Yandra”, and I think I just, like you said offline, sometimes people make it more exotic sounding than it actually is. So, Jandra, welcome back, sorry I’ve been mispronouncing your name for a good three months.

Jandra Mueller:

Thank you. It’s all good. It’s nice to feel exotic and fancy sometimes

Dr. Ruscio, DC:

<laugh>, right? Yeah. Take the small wins when you can. So last time that we spoke, the backstory is we were actually intending to discuss endometriosis, what you’ve referred to as endo belly, but I really wanted to go into that protocol and kind of compare some notes for distension. That does tie in with what we’ll discuss today. But now we’re kind of getting to the initial intention behind the last podcast, which is endometriosis. People have likely heard you on the podcast before, so we’ll kind of skip over your background and your training, and for our audience, she’s been on the podcast a few times before, so I’ll refer you there for some of the backstory.

What is endometriosis?

Dr. Ruscio, DC:

But I’ll say that you and your clinic are one of the primary referrals we go to at our clinic for when we’re expecting or suspecting some sort of pelvic floor disorder, perhaps adhesions, and we’re looking for a different kind of perspective and opinion. Because we’re finding that you’re probably a better first referral than directly to an adhesion specialist, because you have a little bit more of a broader purview. So she definitely has my utmost respect and confidence in her clinical acumen. And today, we will be discussing endometriosis. And I’m sure women have probably heard this term, but maybe we start with just a simple definition. What is endometriosis? Who does it affect? Obviously women, I’m assuming there’s probably some age range in which this is most common, and maybe we start there. What is it and who does it affect? And then we can go into some of the symptoms and historical factors that may increase someone’s risk.

Jandra Mueller:

Yeah, so endometriosis is where you have endometrial-like tissue that’s outside of the uterus. So our endometrium lines the uterus, and it ebbs and flows with our cycle. And essentially its job is to provide the home to an embryo for childbirth. And so we have different stages where it builds up and it sheds, especially if somebody didn’t get pregnant. And this is assuming it’s people not on a hormonal suppressant like birth control. For normal cycles, that’s what happens. And so endometriosis is where cells that are similar to that lining, but they’re different, are found outside of the uterus, and most commonly in the abdominal pelvic cavity. And then it also has been found outside, I think it’s now been documented in every organ of the body, but most people have problems where it’s limited to the abdominal pelvic area. And so these cells can stick to different organs or the peritoneum, which is essentially like a fascial wall of the abdomen.

Jandra Mueller:

And then the second most common place it’s found is in the thoracic cavity in the lungs or the diaphragm. And like the endometrium, it responds to estrogen, and it can proliferate, it can create its own blood supply and nerve growth, and there’s a lot of different sort of characteristics or it’s a very heterogeneous disease, meaning there’s a lot of variability in the lesion type, in the symptoms. But it mostly starts in adolescence, and then some women will find that they don’t really know anything or don’t have symptoms until it’s time to get pregnant. And it’s one of the leading causes of infertility. And so some people may find it when they’re trying to get pregnant. But when we’re talking about pain, it usually starts in the teenage years. And when I say women, it’s you’re born with female anatomy, so you may not identify as a female but have been born with a uterus.

Jandra Mueller:

And most commonly endometriosis is known for painful periods or dysmenorrhea, and infertility. And it affects about 1 in 10 people with uteruses or women. And there’s about a 7-10 year delay. And so you talked about the age range that it most affects, and the most prominent is going to be premenopausal. And there is a myth that it just goes away when you’re in menopause, and that’s not really true, although many people will have symptom improvement when they get into their menopausal years. And it used to be thought of as a gynecological or hormone disease. And what we now know is really it’s involved with the immune system and it’s more of an inflammatory disease that’s very mediated by estrogen.

Dr. Ruscio, DC:

Okay. So clearly a lot here for us to be thinking about. Infertility would be the one. Painful periods, which gosh, I mean that is quite common, at least in my experience. I haven’t reviewed the literature to see how common this is, or I guess it’s partially covered in PMS. But what I see is in our clinical intake paperwork, this is one of the questions that we ask in this section dedicated to female hormones, and you see this quite frequently. Now there might be some delineation between the scale that we use, 0 being none, 4 being severe, maybe a level of 1 is not considered abnormal. So to maybe kind of probe into the painful periods specifically, again thinking that it’s so common, is there a level of severity that is considered normal, and one to which you want to start thinking about underlying causative factors potentially including endometriosis?

Jandra Mueller:

Yeah, for one, if your period pain is so severe that it’s making you miss work or school or social events, that’s not normal. While it’s very common, it’s not normal. But when we break it down to, you know… pain is very subjective because pain is sort of made in our brain, we have stimulus that send the signals that create pain. But I think it’s hard to say if one person’s pain is worse or better than another person’s. But I would say first and foremost, missing out in life due to your period is not normal. The second thing I would say is, yeah, some people might say, “ooh, on the first day of my period I tend to have really bad cramps, but I take an Advil and then it’s fine”. That’s very different than needing to take Advil at high levels every 4-6 hours for multiple days in a row.

Jandra Mueller:

So I would say that’s probably also not quite normal. And then I want to say one other kind of key thing to pick up on in, in many people that have endometriosis, they may also say… the way that I ask in my eval is, you know, before you started your period, were you always that kid that kind of was in the nurse’s office, had stomach aches, like especially around eight, nine years old? And that’s when we start to develop our breast buds. So estrogen is starting, and it may manifest as some GI issues or constipation, and they may have a lot of stomach aches leading up to onset of period.

Dr. Ruscio, DC:

Okay. So are there familial factors? I’m assuming that, you know, there’s the fairly obvious… if your mother, grandmother, sister, you know, if there’s a family history of endometriosis, that’s one flag, infertility would probably be another obvious one. Are there any other familial factors that one should be taking stock of?

Jandra Mueller:

Yeah, and it’s noted in the literature, if you have a relative with endometriosis, you are about 7-10 times (I believe it’s 7-10) more likely to have endometriosis. And when we start to talk about the common versus normal, this is another one. I think that we are much better about talking about periods and endometriosis now. But a lot of times, you know, even when I was growing up… this is a great example. So I also suffer from endometriosis. So I’ve taken a particular interest in this disease, but you know, I didn’t know a lot of my family history, and my sister was diagnosed, she’s four years younger, right away, there were a few ER trips, but it wasn’t until I really started diving into my diagnosis that I think it was my second surgery and my mom said, oh, did I ever tell you I had a hysterectomy when I was 31 <laugh>? So, you know, it’s not… to our parents, and I think in the generations to come this will change, but because there’s such a huge family or genetic component, it may have been very normal for your mom or their mom to have it, and it wasn’t talked about. So to them it was, you know, “normal”. But they didn’t have anything to reference it to. So asking about family history is a good one.

Dr. Ruscio, DC:

Yeah. You know, we see something similar in the clinic where, ironically, even though sometimes people come to us with the primary intention of double checking their thyroid diagnosis, they will not accurately list their family history. And there’s been, gosh, maybe in the past two months, there’s been maybe three times where I’ve said, you know, geez, you were diagnosed, as “hypothyroid” based solely upon Hashimoto’s antibodies three years ago? And there’s no family history of hypothyroid? Oh no, well my mother’s hypothyroid <laugh>. And this matters, right? Because you know, while we have tried to sound the alarm about the incorrect diagnoses that occur in thyroid, we’re really just trying to get to the most accurate diagnosis. So if there’s a data point that supports the person is hypothyroid, we want to know that, because we’re just trying to dial in the data to give us the most accurate probability assessment.

Dr. Ruscio, DC:

But you know, that’s just one example of how, I guess for clinicians out there or for patients who are going to be filling out paperwork in the future, take a moment to fill in that history data as best you can. Now, sure. Do you have to go back to, let’s say, you know, my mom was diagnosed with asthma when she was 17 and from 17 to 19 she had asthma and then it cleared? Okay, that might be too much information, right? But you know, a frank condition that usually results in lifelong treatment or surgery, meaning hypothyroid or maybe endometriosis, would be something that you’d want to ask about. And a good clinician should be following up on these things if items are flagging in your paperwork. But you can make it easier if you just make sure to, you know, check with the family on some of these things.

Jandra Mueller:

Absolutely.

Surprising secondary effects of endo

Dr. Ruscio, DC:

Okay, so we’ve covered the definition, some predisposing factors. Now I know that there’s some discussion that due to this buildup of tissue, and how this tissue might occlude the intestinal lumen, there’s an association to constipation, to distension, and I believe also to SIBO. So maybe we can start with some, what I’m assuming are non conventionally recognized, at least not yet, entities that are starting to pop up in the literature as secondary effects of endometriosis. And let’s start with maybe GI, because I’m sure that’s what people are really curious to hear about.

Jandra Mueller:

Yeah, so there’s a lot of theories of how endo got to be where it is. And that’s one of the advances we’ve made in thinking of it as a gynecologic… from a gynecological disease to an inflammatory or immune system disease is the theories I think that we knew about for so long kind of told us potentially why the lesions are where they are. But it doesn’t tell us how that cell may have changed into this type of cell. Some of the theories touch on that, but one of the more recent theories is this bacterial contamination hypothesis. And this is really the first theory that brings in the GI system as a potential trigger for endometriosis. And when we talk about leaky gut or dysbiosis in particular, and a lot of these high gram negative bacteria, they’ve looked at some of them, in particular e. coli, and there are some studies that have looked at the genitourinary tract where we have e. coli, but also the gut, but kind of the levels that are there are different among those diagnosed with endometriosis versus those who do not have endometriosis.

Dr. Ruscio, DC:

So what you’re saying is there’s a, to some extent maybe gut or bacteria, to causing endometriosis connection.

Jandra Mueller:

Yeah. Because of the inflammation associated. So is it getting sort of outside of the gut, or when these types of bacteria sort of die off and there’s a high amount, they talk about the lipopolysaccharides or LPS, and it triggers this inflammatory cascade. And so one of the theories bringing in the gut is that’s sort of along that line. And so when we think about GI symptoms and IBS, it’s a lot of the same background as to what’s going on in somebody with IBS, male, female, whoever. But you’re seeing some of the same kind of pathophysiology that’s occurring in in those with endometriosis. And that might not be everybody. There are some clinicians, thank God, doing some phenotyping in those with painful lesions, those without, because it is such a variable disease that not everybody presents the same way. But with the GI connection and going back to adhesions in the gut, it’s actually more complex than that, because about only 9 or 10% actually have lesions on the bowels, but about 90% have IBS symptoms. And so we know that there’s more of an involvement than just the lesions themselves on the… like a structural issue with the bowel, although that is one area, but it’s more of the inflammatory state and the crosstalk between these different organs, and the inflammatory processes going on in both organ systems.

Dr. Ruscio, DC:

Interesting. Okay. Because one of the first things I go to, and perhaps this is due to maybe some of my educational bias, and speaking with Larry and Belinda Wurn from Clear Passage. I’m pulling up a paper where they were able to decrease at least dysmenorrhea… and I believe with the Wurn therapy, the manual therapy, they were treating and breaking down endometriosis, and at least from some of their narrative, adhesions– not to say that adhesions and endometriosis are necessarily the same thing, but with their therapy they were able to break down adhesions, help take off this pressure from the bowel, and then improve things like bowel obstruction, pressure on the lumen causing SIBO, and I’m assuming they’ve also had results with constipation. But what you’re saying is it’s more complicated than that. But how do you distinguish these two? Are they both happening? Is one happening more than the other? What’s your perspective I guess on the mechanical hypothesis versus the inflammatory hypothesis?

Jandra Mueller:

Yeah, I think both are relevant. I would say that my hands physically cannot break down endometriosis lesion. So I would say that that’s a pretty hard and fast, that’s not what’s happening. But not that they can’t benefit. So I believe this is like a visceral manipulation therapy. And we do send to visceral manipulation therapists because you can create a lot of changes in how the motility in the fascia is moving, which it doesn’t have to be a primary obstruction, like a lesion on the bowel, but there is distortion in some of the organs. And so the way that maybe for example the uterus kind of tends to be stuck more towards that left side of the body. Or for example, in the last surgery that I had, my whole sigmoid colon was adhered to the left pelvic side wall. Now, I was having a lot of right shoulder issues, and one of the symptoms of diaphragmatic endo is this right shoulder pain.

Jandra Mueller:

And it’s very specific. And we didn’t find it on my diaphragm, but once she released the adhesions during the surgery of the bowel, my whole right shoulder opened up. And your body’s going to protect the viscera as best as possible. So you may have changes in the musculoskeletal system because it’s sort of the protector. And this goes into some visceral therapies, and there’s a lot of debate as to why visceral therapy or manipulation works, but a lot of people believe that you’re changing sort of the brain and how the body’s moving. And so if you free up how the body’s moving, especially if somebody’s had these postural changes from endo, from pain in this like kind of forward fetal position, and you’re opening that up whether it’s with visceral manipulation or PT or stretching or yoga, you’re creating a change in how the body’s moving and responding. And so you can absolutely get benefits even if you’re not touching the lesions, if that makes sense.

Dr. Ruscio, DC:

Yeah, no, this is really helpful, and what I like about this is it expands the paradigm through which I’m thinking about this, which absolutely correlates with how we recommend thinking about things, which is the outcome of the intervention is what’s most important. And the mechanism that you think you are treating is really less important, because as you just helped me to see, my mechanism was either incorrect or incomplete, which is why again it’s so important to think about the outcomes and make sure that the data that you’re using to evaluate if you use a therapy, if you don’t use a therapy, is really more outcome data. And as another example, I was incorrect in my thinking on the use of chaste tree or vitex, only having– this is a quick tangent, but– only having utility in women who were cycling. Because I had some information, some mechanistic information, about how chaste tree functions as a dopamine agonist and therefore helps a cascade of this dopamine prolactin gate in the brain, which allows better luteinizing hormone signaling, which allows better progesterone production.

Dr. Ruscio, DC:

So if the mechanism of chaste tree acts through the brain down to the ovaries, and the brain-ovary connection is somewhat severed if you will, post-menopausal, then you would not expect chaste tree to help post-menopausal women. But we talked about in the podcast maybe three months ago that we had this sort of bet between Dr. Joe and myself, and he won the bet, because there was data showing that chaste tree also works for the same symptoms of female hormone imbalance in post-menopausal women. And I was like, ah, well there I fell into the same thing I warn off against, thinking and restricting my thinking to what a mechanism suggests.

Dr. Ruscio, DC:

So just a quick tangent supporting why it’s important to really look at the outcome data, and I mean sure, we can discuss the mechanism, but so often, and I’m sure you see the same thing, patients come in with a theory about why they should do a therapy based upon a mechanism that they think is the primary driver and you have to kind of redirect them… oh yeah, it’s interesting hypothesis, you know, John, but what we really want to look at is will this help your symptoms and not get too wrapped up in this six step pathway that you’re kind of connecting the dots. And I understand that can be a part of the healing process. You’re trying to understand, you’re trying to connect dots of mechanism, but this is why I always recommend to our patients and to our audience that we want to think about what do the outcome data or interventions show. So long rant, but yeah, there it is.

Jandra Mueller:

And I think as we also study and learn more, that may change, and what we once thought is just now different or disproven with more information, more studying. With endometriosis in particular, you know, most of the research that has been out there has been funded by some of the drug companies, which, you know, some of it can still be good information, but when you look at research, right, there’s some sort of bias. And until we get good research, which… people haven’t really been wanting to study endometriosis for a number of reasons, and that’s changing slowly, which is great. But I think understanding a mechanism can push for different treatments or you think about, okay, what’s happening, that might open the doors for other things. It’s just you also need to be flexible in that with newer information, that may change. And you need to also kind of be flexible in your thought pattern that okay… but at the same time too, if something’s working, it might not always matter what the mechanism is.

Symptoms & warning signs to look out for

Dr. Ruscio, DC:

Right. Yeah, exactly. Precisely. Okay. So this list that we’re building, it’s a bit chicken or the egg, right? SIBO, constipation, distension is also on there, correct?

Jandra Mueller:

Mm-hmm. <affirmative>.

Dr. Ruscio, DC:

Okay. What else should people be thinking about in terms of symptoms that could flag endometriosis is present?

Jandra Mueller:

So some people, again, with more phenotyping studies and knowledge this is going to be important, but central sensitivity. And so, you know, it’s not that they have a low pain tolerance, it’s just their body tends to be more hypersensitive. So other chronic overlapping conditions like interstitial cystitis or bladder pain syndrome is one of those, pelvic pain or vulvodynia can be associated. It’s been associated with certain autoimmune diseases like Hashimoto’s or lupus also. While endometriosis isn’t itself technically an autoimmune disease, it is associated with other ones. Constipation, IBS, absolutely. And general chronic musculoskeletal pain as well. And that might fall into those that are more centrally sensitized essentially. But with SIBO, going back to some of the adhesions, that might be a secondary thing too, where there is some distortion, maybe not direct to the bowel, but we know with SIBO, one of the causes of SIBO is adhesion formation, right?

Jandra Mueller:

And so I wouldn’t dismiss that, even though it might not be on the bowel, there can be some changes that obstruct the bowel as a secondary method. But also being in chronic pain for so long, when I work with patients with SIBO, I found one of the things that I’ve identified at least clinically has been looking at the stomach acid and parasympathetic and sympathetic activity, and how is everything turning on when you’re eating? And if we’re thinking about dysbiosis issues as also a primary factor or trigger in somebody with endo, you know, what’s going on from upper GI down, and are they actually getting everything turned on when they’re eating or is there more promotion of almost like a functional dyspepsia situation and stomach acid. So I think about that with the chronic pain and how often somebody’s in pain, and how is that affecting that part of nutrition or absorption issues.

Jandra Mueller:

And just going back to some of that inflammation in general. But I know for me, I dealt with some SIBO issues that kind of got treated, symptoms would come back. And then once I had my first good surgery, I haven’t had SIBO or SIBO symptoms again. And I did the different antibiotics, I did the different herbal protocols, and it was all the right things. But there was something else as a driver, and for me at least, it was getting the adhesions addressed by surgically removing them. But I had to do a lot before to make those things work. And that’s not for everybody, but I see that in a lot of my patients as well.

Surgery vs other treatment options

Dr. Ruscio, DC:

So one of the other things I wonder about here is, the surgery I’m assuming is laparoscopic predominantly?

Jandra Mueller:

Yep.

Dr. Ruscio, DC:

Okay. So the surgery is minimally invasive, minimum recovery time?

Jandra Mueller:

Yeah. The surgery, I mean, and again, it depends on the extent of the lesion, right. And one thing to note about endo as well is symptom severity does not correlate with severity of disease. So that’s another twist to put in is you could have, you know, just a couple lesions, but be really severely affected by the disease. And you can also have it everywhere and really have no symptoms. So that makes it tricky as well. And surgery, the gold standard is laparoscopic excision surgery. So it’s where a doctor that’s highly trained goes in and looks everywhere. They should be looking everywhere. And they go in and they’re removing the lesion. There is a surgery called an ablation surgery where they go in and burn the tissue. And now more and more people are accepting the excision surgery. But when you don’t… the thing about endo is that if you have a deep infiltrating lesion but you burn the tip, you don’t know how deep that goes. And so the thought is you have to remove it all because these lesions can sort of be active still underneath, like the tip of the iceberg.

Dr. Ruscio, DC:

Right, right. Okay. And one of the things that comes to my mind here is, and this is just sort of a broad clinical or philosophical construct, but if we’re not able to get, let’s say, motility perfect, or remove all the adhesions, one of the things that I have found helpful is periodic re-treatment with antimicrobials, or periodic resets with elemental diets. And there just have been some cases where we know there’s an active issue where there might be a stricture, there might be a torturous bowel, there might be some type of adhesion that is challenging to deal with for whatever reason, there might be a resectioning of the intestine. And so we know that in short bowel syndromes for example, that SIBO recurrence occurs just to the anatomical changes that have occurred. And so in these cases, I’ve found a decent level of success with just finding a therapy that works, and then periodically re-administering that therapy to kind of re-clean house, so to speak. Whether it be, again, elemental, antimicrobials. So I’ll put that out there as an idea. What are your thoughts on that, Jandra? I’m not sure if you experiment with that at all, but any thoughts there?

Jandra Mueller:

Yes. Especially, I mean, with the antimicrobial therapies, I am all about that and again, going off some symptoms or having like sometimes berberine or oregano, like there are some other uses for that other than just SIBO. And so that I do like as well. And especially elemental, I really do like your elemental diet. I’ve had to do the other ones before, and so from doing a few different ones, the taste and everything I like, and before my last surgery, I kind of did that to keep everything just more minimal. And I do think it’s great to get a nutritious substance in your body but at the same time give your gut a break. And I do recommend those things for some of my patients. You know, have it on hand when there’s a day that you don’t feel good, like do a little reset, or do it as a meal replacement versus not eating essentially. And many of my patients have tried it as well, and really have felt a lot better in doing that.

Dr. Ruscio, DC:

Right. Okay, that makes sense. So just trying to give people, I guess this spectrum of intervention, where they may not always have to go to surgery, there might be other ways to come at this. And I like thinking about things typically from a linear perspective, least invasive all the way up through most invasive. And it’s not about right or wrong or good or bad, but rather, let’s start with the cheapest, the safest, the least invasive and then work our way up.

Jandra Mueller:

Yeah. And I would always say to start there, regardless if you already know you’re going to have surgery or need surgery, you’re only going to have a better outcome if you can start to control some of these other factors that are also pain generators. Because also if you go straight into surgery but you have all these GI issues, your diet’s all off, you may have a really great surgery and not really get the benefit from that, or you do get the benefit but you don’t feel the benefit, because all these other things haven’t been at least starting to be addressed essentially.

Dr. Ruscio, DC:

Great point. Great point.

Is it endometriosis or a pelvic floor disorder?

Dr. Ruscio, DC:

Now we’ve talked about, or discussed, ad nauseam I feel like in the past, pelvic floor disorders. Yeah. And how are you differentiating if let’s say some distinction and pain are coming from endometriosis as compared to something that’s more musculoskeletal?

Jandra Mueller:

That’s a great question. And the patients who have endometriosis are often some of the most complex. And even as a provider that’s done this for several years, sometimes you’re like, okay, where do I start? Sometimes you don’t know until you start to just do the treatment and see how people respond. How I look at it is treat the… what do I find? And let’s work on those things. And I even kind of create a mental list or even sometimes a physical list and I think, okay, here’s all this, here’s all this, like musculoskeletal, GI, potentially endo. And I start treating with what I can, with what would make the biggest change. And so if somebody comes in and I suspect this or they’re diagnosed with it and I find that their muscles are very tight, they have this bloating, that might change if somebody’s had the surgery versus not, I just start and do the same things. You just treat the impairments. And especially in somebody who hasn’t had surgery, I might see, okay, you know, the trigger points aren’t really prominent, you’re not having as much pain when I touch you, the motor control is normalized, but these symptoms haven’t changed, I might start thinking of endo as a more primary driver versus musculoskeletal as a primary driver.

Dr. Ruscio, DC:

Sure. And for our audience, I just want to flag that how this likely manifests from visit to visit is your clinician potentially needing some time to start let’s say with a few interventions in pelvic floor therapy, and then not seeing quite the response that would be ideal. And now, like you just said Jandra, you’re thinking ah, this might be endo. So I just want to echo that because for the patients that don’t see response after the second, third, or maybe even fourth visit, I understand how frustrating that can be. But if you have confidence in your provider, stick it out because you might be one step away from that pivot to the therapy that would help you. And if you go to another provider, you might start back, you know, at the same list of six potential things, another good provider might make that same list, and you go back to one, and then to two, and then to three and say, oh I’m not getting anywhere, I’m gonna go see someone else.

Dr. Ruscio, DC:

And this might actually account for why some people have been to five providers and not seen the results, because they may not have given the provider enough time to fully get there. Now I also want to just recognize that sometimes after one or two visits you get a bad vibe and you want to move on. Totally fine. But just keep that in mind guys, to, again, important caveat, if you have confidence in them, give them some time. Because a good clinician will be working a list like this, and it does take some time to trial various therapies and see if you’re getting traction. And then usually after I would say the third or fourth visit, your provider should be saying, well, you know, we’ve… I often say we’ve zigged and zagged a few different directions in the GI, we’re not getting the response, I think there’s probably a lateral system causing a problem here, so we’re now gonna move to X, Y, or Z. So communication helps, but just bear in mind that patience can really be a virtue with a clinical process.

Jandra Mueller:

Yeah. And I think if you as a patient are listening to this, I think it’s always great… you want to work with your provider, right? I kind of think I’m somebody who has a lot of resources, but you are the observer of your body, right? And so expectations also have to match. And so if there’s an expectation of “well, I just want to feel better”, I really like to break it down and say, okay, by treating this area which we’re going to focus on for, you know, three, four visits, I should expect to see XYZ symptoms. And it might be subtle at first, but I want a change. And so if this is happening to you and you’re listening to this, it might be a great time to have a conversation: well by treating this, what should I be expecting to change? And sometimes that’s really key, because you might say, oh actually, you know, I have had like less intense back pain, or I actually haven’t had as much diarrhea, if you’re working on gut. So knowing what you should be expecting is also really helpful to know if there’s been a change. And that could be in the intensity or frequency of symptoms as well as just it being there or not there.

Which symptoms are most indicative of endo?

Dr. Ruscio, DC:

Yep. Great point. Great point. Okay, so what symptoms do you feel are the most indicative of endometriosis potentially being present? I know this is maybe a hard question, but right now I’m picturing someone who has maybe gone Paleo, then to low FODMAP, they’ve done an elemental diet reset, they’ve used probiotic triple therapy, they may have used antimicrobials, they’re exercising, they’re meditating, they’re getting enough sleep, they’re getting some time in nature, and they’ve probably seen some response, but there might be some lingering symptoms. And I’m trying to help that cohort of people say, oh, you know, if I have these symptoms, they might be the most instructive.

Jandra Mueller:

Yeah. So I mean it’s going to vary for sure, but I go back to period health. You know, and sometimes it’s, okay, let’s talk about when you started your menstrual cycle. Because also it could be that they don’t really have painful periods now, but maybe they have this ongoing GI issue that’s not responding to therapies that it should be. And actually that was my case, which was a little tricky because I didn’t really have painful periods, but I had these chronic GI symptoms that wouldn’t go away. And I think going back into your history, especially if you’re not a pelvic floor PT, if you’re a GI doctor, or you work in functional health, you may have not asked these questions in depth, then they may say, “oh, my periods are okay”. Well number one, are you on some sort of contraceptive, because that actually is first line therapy to treat the symptoms.

Jandra Mueller:

And they say, oh, yeah. “Well, when did you start those?” “Oh, when I was, you know, 14, 15.” “Was it for contraceptive purposes?” “Oh no, it was because I had really bad pain.” That’s a huge trigger in my mind. Or yes, you know, cyclically, they get really bad, and I really do actually have some pretty severe cramps, I have to take Advil the first couple days of my periods, or I have to miss work or school. And when I was younger, this was really bad and I missed school often. I think you may not always get that initial history at first, especially if you’re really focusing just on GI, and there’s a lot of obvious things like SIBO or dysbiosis, diet, and you’re getting the meditation on board, you’re getting the exercise, the diet, the gut treatments. But I think going back to your history might be really important to flag what those symptoms are coming from. So the symptoms could be variable, but it could be any of those symptoms that aren’t changing with the right things that you know they should be changing.

Dr. Ruscio, DC:

And with the GI symptoms, are they more so consolidated to distension and constipation?

Jandra Mueller:

And diarrhea. But in some of the research that’s been done, constipation has been more of a… I’ve seen it more reported and in patient care, but I’ve also seen the reverse with like loose stools. And I also think about, in that particular case, more of a gluten issue. When there’s been diarrhea associated. Or I’ve also seen a lot in this population, it’s my own sort of theories, is like mast cell issues actually. And so with diarrhea in particular, I also think about a history of, you know, did you have asthma? Do you have skin sensitivities? Have you tried doing gluten-free or avoiding gluten versus gluten-free products? But in my patients I see a lot more, if that’s not the picture, constipation and bloating or distension.

Dr. Ruscio, DC:

Okay. And with the reasoning for initiating birth control. Pain and cramps, are those the most common, you know… are irregular cycles something to be thinking about, or is there anything else in terms of what prompted the birth control to have on one’s list?

Jandra Mueller:

Usually it’s painful periods or really heavy bleeding, or ER visits with “ruptured cysts”, and it’s, okay, well we can manage this, go on birth control, because it sort of shuts down your cycle. And when we think about how endo was thought of before as a gynecological disease, but we do know it’s mediated by estrogen. So when you’re given birth control pills, you stabilize that, and you can either do… some doctors will prescribe a low dose estrogen combined pill, or a progestin only like norethindrone for treatments, and for many it can actually help improve their pain and symptoms. The issue is that it’s given as a first line therapy, and the thought is is that it’s treating the disease, but it’s not, it’s managing the symptoms which is important in that maybe 13 year old that needs to get through school and can’t do surgery right now. And if they benefit from it from a symptom perspective, that’s great. But a lot of people go off of them because they can’t handle it for other reasons, despite it maybe helping their pain. But the thought is it sort of shuts down and minimizes the estrogen production.

Dr. Ruscio, DC:

Gotcha. And with distension, is this due to enough tissue accruing to where it’s pushing the abdominal contents out? Is it some sort of secondary inflammatory mechanism? Is it both? Something else?

Jandra Mueller:

It’s more related to the inflammation, and these lesions also have aromatase, testosterone into estrogen, so they also produce their own estrogen. So there’s a lot of swelling that can happen around the lesions themselves. And I never really thought about like the buildup of them per se, but I suppose if there was enough structural change in holding organs in place that might be there. But I wouldn’t suspect that that would be a cyclical change, right, it might just be this constant area of a bulge. But yeah, it’s more of the change in your cycle and this inflammation around it. And again, what happens when you have abdominal pain, the first thing you want to do is curl into a ball.

Dr. Ruscio, DC:

Diagnosing endometriosis

Dr. Ruscio, DC:

Right. Sure. Who diagnoses this or who is the best person to have diagnosed this?

Jandra Mueller:

Technically OB-GYNs that are skilled in or trained in endometriosis and really understand what this disease is are the people who should be diagnosing this. But there’s a wide range of knowledge, again, that in med school, and I’ve learned this, although I didn’t go to med school, from some of the physicians I’ve worked with, you know, they’ve said they barely got any information on endo. It was sort of, here’s a few different lesion types, and that’s kind of I think still recognized where there’s a bunch of different lesion types when they go in for surgery, but they learn that it’s the endometrium outside of the uterus, which that’s technically not correct. It’s similar cells to it. And it’s diagnosed by going in and doing a laparoscopic surgery, looking at the whole area from the diaphragm down into the rectovaginal septum, or the pouch of Douglas, in and around.

Jandra Mueller:

And there’s three sort of categories of endometriosis. You have superficial lesions, which tend to be on the peritoneum of the abdomen, so that fascial layer. You have ovarian endometriosis, which is a type of cyst, and endometrioma are sometimes known as a chocolate cyst, that sometimes can be picked up on ultrasound or MRI. And then you have deep infiltrating lesions which are often found on the organs themselves or the pouch of Douglas, the uterosacral ligaments. And sometimes you can see that on imaging, although most people who get sent for imaging that have endo, they see nothing. So you can’t diagnose it yet by imaging, although that’s an area that’s improving as well. But the diagnosis comes from visualizing it, removing it, sending it to a pathology lab who then tests for certain types of cells in the lesions. And that’s the technical diagnosis.

Dr. Ruscio, DC:

So there has to be some sort of biopsy in order to make the diagnosis officially?

Jandra Mueller:

Yes.

Dr. Ruscio, DC:

Is that fully necessary clinically in your experience or is this getting outside of your area of expertise?

Jandra Mueller:

Well probably technically outside my area, but it is something that I talk a lot about. You know, there’s, because of the types of lesions that present, so there’s some controversy about like fibrotic lesions, which is sort of this white endo, it looks like scar tissue. And there’s different mechanisms that make this type of tissue. But if somebody goes to a surgeon and has primarily this, and it’s sent to the pathology, it may not come up with what’s called endometrial stroma and cells or consistent with endometriosis. It might come back as fibrotic tissue or some other form of tissue. And more experience, but maybe not some of the full specialists may say, oh you don’t have endometriosis. And then they’re told they don’t have this disease when it’s just a different presentation. So that gets a little tricky. And so it’s a little bit outside of my scope to really know that. But because this happened to me, I’m very interested in it, and I see it among a lot of women. And if I get somebody like that, sometimes I will look at their reports and say, you know, it might be worth like, maybe you don’t, but it might be worth getting a second opinion and sending to somebody who I know looks at the whole array, and let them make that decision.

Dr. Ruscio, DC:

Yeah. And that’s a follow up I wanted to ask, which is what should someone be looking for in terms of, okay, they suspect this issue could be afflicting them. It sounds like not just any OB may do. Is this something that OBs will be listing as kind of a subspecialty or one of their kind of areas of focus? You know, what are the indicators a person can look for?

Jandra Mueller:

So there’s a couple of good resources online for patients… and this is one patient population, if any of the ones that I treat, really understand their disease a lot more because they have to advocate. Nancy’s Nook is a Facebook group, they also have a website now, and it’s not a support group but it’s an information group. And there’s a list of surgeons on that group of people that have more experience and training, and it’s more of a patient report after several good reports of these doctors that know how to treat, they’ll get on this list essentially. There’s more providers that also are good that are not on that list. But if you don’t know who your local providers are, that’s a great place to start, because of the amount of information, questions to ask your doctor, and how to sort of sort through which doctors are which, and if this is a good place for you, if this is going be a thorough surgeon that really has trained and knows endometriosis. And then a newer website, iCareBetter, has started doing some video vetting of surgeons to make sure that they do… who’s on this website, they’ve had to do multiple surgeries and there’s other experts that have looked at them and they sort of get on this list. But those are probably the two best places to look as far as finding an optimal surgeon. Talking to your pelvic floor PTs, we often have like our local resources or Facebook groups that can point you towards, but…

Dr. Ruscio, DC:

And sorry, what was that second one again?

Jandra Mueller:

iCareBetter.

Dr. Ruscio, DC:

I care better. Gotcha.

Jandra Mueller:

Yeah. So it’s a newer site that is sort of associated with Nancy’s Nook, and they’ve done some video vetting of surgeons.

Dr. Ruscio, DC:

Gotcha. Okay, cool.

Jandra Mueller:

But again, there may be some surgeons not on those websites that are excellent. But it’s harder to know, unless you are connected with somebody else, like a pelvic floor PT in your area that works with those, with endometriosis, and can point you towards resources.

Dr. Ruscio, DC:

Yeah. And that’s why we’ve been referring to you guys. Just because you’re a stepping stone into that entire world of referrals. So that’s been nice to have.

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Final thoughts

Dr. Ruscio, DC:

What else here is salient, if anything?

Jandra Mueller:

I think an important thing, talking about the surgeon and patient care, is if you have a surgery and you think it’s been, you know, with a good surgeon, or you still have issues, you can always get a second opinion from somebody else. Or if you haven’t done some gut healing stuff and you have GI issues, or you haven’t done pelvic floor PT, I think it’s really important to remember that this is a disease that has many pain generators, and looking at it from an inflammatory aspect and controlling all aspects. You may have had a great surgery with a great surgeon and not felt better, but not have done any of this workup. And I work with an array of really great surgeons where some really promote this long time of preoperative assessment and care to get everything under control.

Jandra Mueller:

And some really good surgeons I work with, they sort of hop into surgery right away, and it’s not wrong, but they’ll still refer to PT and some of these other things. It’s just a different approach of let’s get the surgery, or let’s do some some work beforehand. But regardless of where you’re at, if you still have symptoms, look at it system by system and start addressing that. Because you can feel a lot better, even if you don’t have a surgery. It’s those that don’t respond to the right things that you might say, ooh, I think surgery is going to be, you know, critical in your case.

Dr. Ruscio, DC:

Right. Yeah. And this is where I think just having the right guidance is helpful, and probably another reason why I think starting with the pelvic floor therapist could be a good idea, because I’m assuming, and especially your group, will be coming at this in a more holistic fashion, therefore more of a kind of anti-inflammatory fashion, rather than just going right to treating lesions, which as you said earlier, don’t have a super high correlation to symptoms. So even more reason to make sure that you’ve used the foundational therapies first.

Jandra Mueller:

Absolutely. And it doesn’t mean you have to do one before the other. They can kind of be in parallel. You can work on some PT while you’re figuring that out. They can work in parallel as well.

Dr. Ruscio, DC:

Sure. Will you tell people again the website, anywhere you want to kind of refer them to for how they could connect with you guys?

Jandra Mueller:

Yeah. So some good patient resources are Nancy’s Nook (endo Facebook group), and I believe it’s NancysNookEndo.com. iCareBetter has some video-vetted surgeons and PTs currently that are more endo experts, I would say. And then to find us, and we do do telehealth consults, so if you’re out of state and you’re wanting recommendations or help finding the right people for you, we do offer that via telehealth. And our website is PelvicPainRehab.com, and you can follow us at @PelvicHealth on Instagram. And then another great resource too, which, they’re doing some really good work in getting some funding, is Endo What?, And it’s EndoWhat.com. And if you are more interested in learning more about endo, their first film, Endo What?, is a great film that talks about the disease and the implications. And then they’ve just released their Below the Belt film, which highlights four women, five women, and their sort of journeys behind this. And they’ve gotten some good funding going from the government and they’re starting to go into med schools and teach more about this. So there are some virtual screenings of the film that’s coming up in an area. So I would definitely check out that as well.

Dr. Ruscio, DC:

Sweet. Well per the usual, you are a wealth of knowledge, and especially in this area I guess, because you’ve dealt with it clinically and personally, so you kind of have both ends of the spectrum, and, yeah, just really appreciate you taking the time, sharing with us, and hopefully this helps a few people who might have endometriosis or “endo what” <laugh> and don’t know it, and guides them kind of on their path. So thank you again.

Jandra Mueller:

Well, thank you for having me and talking about this condition. It’s really important to me personally and clinically and to many people out there.

Dr. Ruscio, DC:

Yeah, certainly. Been a pleasure.

Outro:

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