What is Extrapelvic Endometriosis – Case Study with Camille and Dr. Shanti Mohling

Dr. Jessica Drummond 00:00:03 Hi and welcome to the Integrative Women’s Health Podcast. I’m your host, Doctor Jessica Drummond, and I am so thrilled to have you here as we dive into today’s episode. As always, innovating and integrating in the world of women’s health. And just as a reminder, the content in this podcast episode is no substitute for medical advice, diagnosis, or treatment from your medical or licensed health care team. While myself and many of my guests are licensed healthcare professionals, we are not your licensed healthcare professionals, so you want to get advice on your unique circumstances. Diagnostic recommendations treatment recommendations from your home medical team. Enjoy the episode. Let’s innovate and integrate together. Hi and welcome back to the Integrative Women’s Health Podcast. I’m your host, doctor Jessica Drummond, founder and CEO of the Integrative Women’s Health Institute. Today we have a really important episode. Today I’m hosting Doctor Shanti Malang and Camille Dolan’s. Now Camille Dolan’s is our marketing manager here at the Integrative Women’s Health Institute. But more importantly, in this episode, she is a woman who has navigated her own experience of healing from endometriosis and with endometriosis.
Dr. Jessica Drummond 00:01:42 As we know, relief of symptoms does not necessarily constitute a complete cure of the disease. But she is living very healthfully now and has a wonderful story of hope, but also a really important story of the challenges of navigating the health care system with endometriosis. Of the challenges and doctor molding will share this as well of, you know, navigating the complexity of the surgery required in most cases for endometriosis that you know, the skill set for these surgeries are ideally a collaboration between a gynecologist that has the skill set of a gynecology, oncology and a general surgeon, especially when we’re talking about extra pelvic endo. So in this episode, we are going to dive deep with Camille’s experience with Doctor Mullings, experience with a little bit on her research about leaky gut and endometriosis, which of course won’t surprise anyone here as we’re always talking about the integrative and nutritional approach to endometriosis. So this may be a tough episode to listen to. If you are navigating endometriosis yourself, so definitely take care of yourself. But absolutely. For all practitioners working with people healing from endometriosis, this is not to be missed.
Dr. Jessica Drummond 00:03:15 Briefly, I want to share with you Doctor Mullings bio. She is a very skillful surgeon. She is a board certified and fellowship trained gynecologist and gynecologic surgeon. She joined Northwest Endometriosis and Pelvic Surgery Center. That’s where she’s located. You can also find in her show notes how to learn more about her, how to get in touch with her, how to follow her on social media, more about her practice. So look at the show notes for that level of detail. She joined Northwest endometriosis in pelvic surgery practice in May of 2021, where she brings her outstanding talents in endometriosis care, gynecologic surgery and biomechanics to that practice, doctor Moline is committed to providing world class surgical care to women with complex gynecological surgical issues, including endometriosis, chronic pelvic pain, heavy bleeding, fibroids, pelvic organ prolapse, and incontinence. Doctor modeling focuses on minimally invasive surgical techniques for all surgeries and can complete most surgeries via a robotic surgery or laparoscopy, which is tiny incisions even in cases that might require performance through a large abdominal incision.
Dr. Jessica Drummond 00:04:41 Doctor Mullin has the skills to complete these procedures through a minimally invasive approach. She has great experience and knowledge in the biomechanical aspects of pelvic pain and dysfunction As a form of massage therapist during her pre-medical years, she maintains a deep appreciation for the role that the muscles, tendons, ligaments, and I’m sure fascia can play in perpetuating pelvic pain. She’s an in-demand speaker and educator on the topic of advanced gynecologic surgery and endometriosis, and gives educational talks and tutors. Other surgeons boast both locally and at national and international meetings. Doctor Mullings past career included a history of service in academic medical centers, as well as years of private practice as a generalist in both obstetrics and gynecology. She was previously the Director of gynecologic Surgery for the residency program at the University of Tennessee in Chattanooga, Tennessee, where she was also the associate director of there, a minimally invasive gynecologic surgery fellowship. She’s deeply involved with the American Association of Gynecologic Laparoscopy, serving as past president of the Foundation of the RCL, as well as a past member of the Scientific Program Committee.
Dr. Jessica Drummond 00:06:02 So she’s bringing this complex and extensive background to this conversation. I love her background in manual and massage therapy. I think that’s so rare for a surgeon, but she has a really unique perspective. So let’s get into the episode and I’ll meet you on the other side. Well, we’ll talk about how you can integrate what we’ve learned here today into your own practice. See you there. Hi, everyone, and welcome back to the Integrative Women’s Health Podcast. I’m Doctor Jessica Drummond, founder and CEO of the Integrative Women’s Health Institute and your host for today. I’m thrilled to be joined by Camille Dolans and Doctor Shanti Maling. And we’re going to be talking about a patient experience and a surgeon’s perspective, especially on extra pelvic endometriosis, which I don’t think gets enough attention. I would love to welcome you and have you share a bit of your story. Navigating healing from endometriosis.
Camille 00:07:18 Yes. Thank you for that introduction. My name is Camille and I am currently 31 years old, but I have had symptoms of endometriosis since I was 13.
Camille 00:07:30 Like many, I was diagnosed at 23. So ten years after symptoms had begun and I was diagnosed via laparoscopic surgery with my regular gyno. And surprise, it didn’t help and it actually ended up causing a lot of other problems for me. And that was about eight years ago. And after that I tried everything to try to manage my pain, try to manage my symptoms. It kind of felt like as soon as I found out about the endo, all of these other problems arose, like interstitial cystitis and just chronic, widespread inflammation, as well as like the emotional toll having endometriosis. And then I ended up moving to the Pacific Northwest in 2018 because I knew that they had more integrative care generally, but especially for endometriosis. And I had one surgery with a different specialist in 2019. So my second surgery, who I know was a good surgeon and better than definitely my regular gyno, who I had had before that. But that surgeon still did not look in my thoracic cavity when I had surgery. So it was just at a surgery center’s pretty standard pelvic endometriosis surgery.
Camille 00:09:02 That was in 2019. Then middle of 2020. In like the thick of the pandemic, I went back to the same clinic and instead of seeing the same surgeon, I think he was unavailable. They scheduled me with Doctor M’ling and they were like, she’s brand new. She just moved here and I was like, whatever. And like, I’ll see anybody who could maybe help me. And I saw her. And that was the beginning of working together. We tried a lot of different things to manage my pain, to try and see if we didn’t have to have surgery again. And I think that went on for maybe 5 or 6 months before we got to the point where Doctor Mullen was like, okay, something is going on, and that’s bigger than, I don’t know, something else is going on here. So I had surgery with Doctor Molly in February 2021, and this was at a time when I remember we were trying to schedule the surgery and the hospitals were closed, or only emergency surgeries were being allowed to be scheduled.
Camille 00:10:05 And so it felt like I almost wasn’t able to even have the surgery. But I’m so glad that I did, because going into the surgery, I was under the impression that it would be like 2 or 3 hours, you know, for similar pelvic surgery to what I had had. But Doctor M’ling is a very thorough surgeon, and, you know, she was going to look everywhere and take out whatever she found. And she ended up finding extra pelvic endo, specifically diaphragmatic endo, that had been there at least ten years that had been missed in my previous surgeries because surgeons don’t look or they’re having surgeries in places where they don’t have the equipment and the technology to do what they need to do to be able to find that pathology. But she found it. They called my family while they were under. They had to go in through my ribs and do a diaphragm resection. I had nodules full thickness through my diaphragm, so it was crazy to wake up in the hospital and have Doctor Mullin tell me all of that.
Camille 00:11:13 But I feel like a new person and I am grateful for it every day.
Dr. Jessica Drummond 00:11:21 Thanks so much for sharing that, Camille. So, Doctor Malling, can you tell us a little bit about from a surgical perspective, when someone presents with endometriosis, obviously the most common place to begin to look is in the pelvic or pelvic abdominal region. What kinds of signs symptoms, imaging part of your exam, etc. would cue you to consider to look in areas outside of the more commonly understood areas of where endometriosis tends to present.
Dr. Shanti Mohling 00:11:56 Yeah. So I think let’s first define what extra pelvic disease means. And for me in my practice how I’ve come to define it. So pelvic disease would include the pelvic peritoneum, the ovaries, the fallopian tubes, maybe the surface of the bladder, maybe the posterior cul de sac. So the peritoneum of the deep pelvis, all of that I would consider pelvic disease once you are invading the intestines, invading the appendix, affecting the surface of the diaphragm, or even into the pulmonary cavity.
Dr. Shanti Mohling 00:12:35 You have extra pelvic disease. If I remember correctly, and I am assuming, Camille, since we are doing this public presentation, I can speak about your case freely. But we even had some disease, if I remember correctly, on the peritoneum overlying the kidney on the right. So we truly had kind of classic extra pelvic disease. So in terms of extra pelvic disease, we know that endometriosis has been found on the pericardium, which I have removed. Also, we know that it can be found even in the brain very, very, very rarely and then a little more commonly, although still not super common on the diaphragm, in the thoracic cavity, on the surface of the liver, and also not too uncommonly invading into the intestines, usually the rectum, sigmoid colon, and sometimes the ilium, which is the area right before the large colon where the appendix comes out right near the cecum. So that’s the second most common intestinal place of finding endometriosis. So what I would say is that when I do my intakes and assessment with the new patient, and this is getting back to your question, how do I make that diagnosis.
Dr. Shanti Mohling 00:14:00 Well, I’m kind of old school. So old school means you actually listen to the patient. You listen to the whole story, and then the patient will give you most of the bits and pieces. And then I make sure that I’ve heard what happens with your bowel movements and your digestion. What happens? Do you have any coughing? Do you have any chest pain? Do you have any flank pain during the menstrual cycle? More seriously, do you ever cough up blood during your period? It’s called hemolysis and that’s pretty extreme case. Another thing that can happen when it is on the lung, not necessarily the diaphragm, but the pleura of the lung. You can get menstrual pneumothorax. So the pneumothorax is kind of a collapsing of the lung. And that doesn’t just happen from diaphragmatic disease. That happens from pulmonary disease. So all of those chest questions are going to be super important. The bowel questions, the chest questions. And then always in my intake I include sexuality pain with sex pain with penetration pain with tampon use.
Dr. Shanti Mohling 00:15:06 And then how’s the bladder functioning. What’s the general pelvic pain like. So sex bowel bladder chest. And then the final thing is fertility. And that’s more pelvic disease, generally speaking. So I take that part of the history. And then I do a very careful exam. And that exam includes a rectal exam and a very detailed interactive exam to understand is there pain on this uterus, sacral ligament, this uterus, sacral ligament behind the cervix? Is there an obliteration of the cul de sac? Can I feel separation between the vagina and the rectum, or is it stuck together? Is there nodule or disease? Can I feel anything penetrating down into the rectum? And so it’s an uncomfortable exam, except for the fact that it’s so interactive there is that it’s educational both for me because I need to know what I’m getting into and for the patient to understand, oh, this disease is specific. I don’t just have this kind of crazy. It’s in my head pain. There’s something specific going on. I feel a thickening.
Dr. Shanti Mohling 00:16:14 They feel pain. And so then I begin to piece it together. Disease on the diaphragm is one of the hardest to diagnose and anticipate. And so very often it’s found incidentally, at the time of surgery. Well, sometimes I think it may not be appropriate to just remove it when the patient is coming in for pelvic pain and problems, because there are complications. And as Camille can attest, it can be extremely painful to recover. The recovery is longer than the pelvic recovery. Maybe 4 or 5, six months, even a year until you finally begin to feel. Yeah. I’m seeing. Yes, yes, this is true. So this is a longer recovery than the typical pelvic disease incisions. So sometimes magnetic resonance imaging will show diaphragmatic disease, but really not very often. It is mostly to be suspected and then seen laparoscopy. And if it’s going to be removed, there has to be a really careful conversation ahead of time. And I think that Camille and I did not expect her to have diaphragmatic disease.
Dr. Shanti Mohling 00:17:29 And so we didn’t talk about that specifically, but we had talked a long time about getting every bit of disease that she was miserable, and it corresponded to flank pain in Camille’s case. Okay.
Camille 00:17:44 Yeah. I mean, I felt like I was dying. And it was before surgery? Yes. Before surgery. I mean, I remember going to you and saying I’d just give me a hysterectomy. I don’t care, like I can’t do it anymore. I can’t sit, I can’t stand, I can’t walk, I can’t, you know, do the part that I’m supposed to do because it hurts to even lay on the yoga mat. And before surgery, I did have an MRI, but it was on my pelvis because with the neuralgia that I was experiencing, there was concern about endometriosis being on my nerves and my pelvis. But we didn’t do an MRI of my thoracic cavity, but I doubt that we would have even seen it.
Dr. Shanti Mohling 00:18:30 Probably not, Although you did have full thickness nodules, maybe.
Camille 00:18:34 Yeah.
Camille 00:18:35 I mean, I’ve had so many scans over the years, CT scans, I don’t know if that would have shown it, but I’ve been imaged a lot, and there was an incident in college where I was in a class and I had to go to the bathroom, and I blacked out because of stabbing pain, like under my ribs. Exactly where this endometriosis was. And my friend had to come get me and take me to the E.R. and they did a chest X-ray and basically told me that I was imagining it and that I was crazy. That was probably, I don’t know, seven years before the surgery that we had. But the only other thing I wanted to add was that the recovery, even from a regular pelvic endo recovery, I would tell people that really it’s a six month recovery, but maybe even a year to feel like totally, 100%. I didn’t have surgery. I feel great for this surgery that I had with the diaphragm resection and everything. I was able to start working out again, really for the first time besides walking at one year.
Camille 00:19:45 But I would say that recovery took 18 to 24 months because the whole first six months was relearning how to breathe, and it was really not something that I had anticipated. But like I said, relearning how to breathe was so much better than the pain that I was in, because pain like that completely captures your consciousness in a way where there’s no space for anything but the pain. So. But it takes a lot of patience.
Dr. Shanti Mohling 00:20:19 Yeah, I want to add something important, Jessica, before you ask another question. And that is that patients like Camille have taught me over the years, over and over, that the patient will tell you what the problem is, and they will tell you that there is a problem. We just have to find it. And so, so many patients are gaslit. And you went to the E.R. with stabbing chest pain, and you were told that you were kind of crazy and you weren’t this really bad disease.
Camille 00:20:49 I also had such bad pain right here that, like, would radiate into my neck and shoulders that two years before I saw you, I had a breast reduction because I had so much chest and shoulder and back and like, pain along my like my ribs on my back, all of which is associated with diaphragmatic endo.
Camille 00:21:14 And I’m pretty sure there was also some like pulmonary disease on the outside of my lungs that we all didn’t take at the time, but that’s something that all the signs were there. But like, I didn’t know. You know, it’s just it’s wild indeed.
Dr. Jessica Drummond 00:21:30 Yeah. And that story is so common. I think that’s the important benefit of sharing these stories. You know, the work that Shannon Cohn has done with the End of What and Below the Belt documentaries and more podcast episodes like this. Because you know, the reality is the time to diagnosis is still roughly 10 to 12 years. And think of all the unnecessary procedures and surgeries you had to go through. So for a practitioner or a nutritionist or even movement or manual therapist. You know, knowing so much from this integrative perspective that preparing people for surgery and then supporting them through that 6 to 24 months of recovery. What are some of the kinds of things that you’ve seen in your practice are so valuable for that pre surgical and post-surgical support?
Dr. Shanti Mohling 00:22:29 Yeah, that’s a beautiful question.
Dr. Shanti Mohling 00:22:31 And I’ve been thinking about it a lot, partly because sometimes you remove all the disease and a person still has pain, and maybe you have a colleague who removed the disease. You go back in, you biopsy a few things, and it looks as clean as it could be, and you know that it was fully excised. And yet the person has pain. So sometimes we have to really start to think outside the allopathic box, because here’s what allopathic medicine tells us, tells us we need to be on birth control pills, continuous birth control pills which are final estradiol and some type of synthetic progesterone. So North syndrome and risperidone, others, or an IUD with levonorgestrel or a Jan RH analogue, which puts us into a temporary state of menopause, really shuts down the hormonal system, temporarily suppresses lesions but does not eradicate them. And there are others. And so what happens with that allopathic model is you get a temporary housing effect that doesn’t have any permanent relief. You get terrible side effects. So I would say there’s data on the percentage of patients with side effects to generate analogs, and not the least of which is bone thinning, which is irreversible.
Dr. Shanti Mohling 00:24:00 So mood symptoms are primary and predominant, and they sometimes are so intolerable they make patients feel nearly suicidal. So it doesn’t seem like a great answer. I also question the whole industry of feeling like all female patients to spawn. Female patients need to be on some synthetic hormone. And so it’s a very, very, very common thing that you go to a gynecologist and they say, well that’s okay.
Dr. Jessica Drummond 00:24:26 What do you not do is informative.
Dr. Shanti Mohling 00:24:27 So you asked me, what do I do. Not what do I not do I think that sometimes those hormonal pills, like a birth control pill or a progestin only pill, can be helpful. And if they’re well tolerated, that might be one tool. So as I think about it, however, I think that some of the non allopathic modalities and also physical therapy which crosses a line into allopathy Allopathy can be one of our big tools. So bodywork, physical therapy, acupuncture. I personally think really good chiropractic can be really great tools to toward not curing the pain of endo, but actually helping the body to function better while it’s dealing with either healing from excision surgery or preparing for excision surgery.
Dr. Shanti Mohling 00:25:25 Or maybe you live in a place where you cannot get access or cannot afford access to surgery. So you want to have some type of bodywork, some type of healing modality. And most commonly we can access pelvic floor physical therapists. But I think a really good massage therapist, some chiropractors who specialize in pelvic health, and certainly acupuncturists who specialize in pelvic health can offer a significant relief. I also I’m a huge fan of diet, and the Western diet is typically not very supportive for an anti-inflammatory condition in our bodies, nor does it typically support a healthy microbiome. So I’ve done a small pilot study showing an association between impaired intestinal permeability, otherwise known as leaky gut and endometriosis. It doesn’t mean that leaky gut causes endometriosis, and it doesn’t mean that endometriosis causes leaky gut. We know there’s some kind of association, and I can talk about that greater length. Another podcast, because I can go into a lot of details about that. But that comes down to oftentimes an imbalance in our microbiome. And what’s so important about the microbiome.
Dr. Shanti Mohling 00:26:48 Well, it carries some huge percentage of the DNA that creates the functioning of our systems. So, for example, some of the bacteria in our colon are responsible for maintaining excellent estrogen metabolism. And let me say this in another way. There are sort of bad bacteria that will reconstitute estrogen so that they get reabsorbed, elevating the systemic levels of estrogen which feeds endometriosis. And by the way, also this has been shown with breast cancer. So what we need is to have a really, really healthy gut. It’s one of the most important things. And how do we get a healthy gut. Right. Well, not just taking a probiotic. Maybe that helps a little. Maybe some of that probiotic that we take orally makes it through the stomach acid and actually gets into our intestines. Okay, so I think that fermented foods have a role, but if we are eating a very wide diversity of fruits and vegetables, plant based foods, 6 to 10 servings a day, we are feeding a healthy microbiome. Most of us have at least some of the good bacteria that we need, and we need to support it and not feed it.
Dr. Shanti Mohling 00:28:05 Potato chips and McDonald’s even just frequent processed, groovy vegetarian crackers are not as good as eating whole foods and whole fruits and vegetables. 6 to 10 servings a day and not the same kind every day. We want a diverse collection of these, and unfortunately a lot of our fruits and vegetables are irradiated, so they also don’t have some of the healthy bacteria that we want. So if we have access to a farmer’s market, if we have access to organic foods, that’s even a step forward. So there’s the gut, there’s physical therapy elements and acupuncture. And then let’s also think about what foods what substances are somewhat toxic. If you have chronic pain you have to quit smoking. You absolutely have to quit smoking. You cannot be ingesting all the additives that go with tobacco plus tobacco and nicotine itself. Okay, so that to me is a given. Pelvic pain and smoking. It does not go together. Alcohol also, and I’m someone who loves to have a little tequila in the evening, but you have to limit it.
Dr. Shanti Mohling 00:29:14 I feel inflamed if I have too much alcohol myself. I think caffeine is another thing that can be misused. I think that green tea, coffee, these have antioxidant properties that can be really helpful and valuable unless you have bladder symptoms from that, and maybe using it in moderation, not in excess is helpful in terms of a anti-inflammatory diet, but also caffeine and certain kinds of alcohol. Mostly red wine and beer, have very high levels of histamine, which can create an inflammatory response as well. So those are some of the modalities. And some people, I think, benefit from psychotherapy. When you’ve been in pain for so long, you cannot help but have depression. There are even some animal models demonstrating depression related to endometriosis just from having endometriosis. You can see in an animal model displays behaviors of depression. So that’s a start.
Dr. Jessica Drummond 00:30:19 I think that’s a really important point. Yeah, I think that mental health piece, it has been under addressed in the world of endometriosis because I think as clinicians there’s that carefully fine line that we have to walk, you know, to be mindful of the patient experience that at all insinuates this pain is all in your head.
Dr. Jessica Drummond 00:30:42 You know, the gaslighting that people have experienced. And, you know, with changes in the gut microbiome, you know, that is one driver of depression. Simply navigating the health care system for so long can be a driver of depression and anxiety. And so I think really caring for people’s mental health as they navigate the system, as they navigate a disease recovery and disease treatment and disease management. Long term, I think not enough people are talking about that. So I appreciate you bringing that up.
Dr. Shanti Mohling 00:31:21 Yeah, and you’re absolutely right. It’s a very delicate subject because so many of these patients have been told it’s in their head. And the prescriptions that they’re given are antidepressants and birth control pills when they have an actual debilitating disease. So it’s a delicate balance when you talk about psychotherapy. Another piece I want to add is even to go so far as to address couples therapy if the patient is in a partnership. Having a debilitating disease is very hard on the partnership, and so having mental health support around that can be really important as well.
Dr. Jessica Drummond 00:32:00 Yeah, absolutely.
Camille 00:32:23 I really appreciate both of you acknowledging this because something that this is just really important to me. I’ve been in therapy long before I knew that I had endometriosis, but a lot of that was about my health, about having a health problem that nobody could figure out and people didn’t believe. And, you know, you tell people that you have endometriosis and basically they’ll ask you if it is terminal and it’s like, it’s not unless there are severe complications. But one of the complications that can be terminal is depression. And like the hopelessness that comes from years and years of being in pain, having surgeries that don’t work, like changing everything. I changed my entire life. And it’s extremely traumatic to have a disease like this and a lot of people, for myself included, like it has taken a lot of work to acknowledge that and to understand what that means in my own experience. And the hard thing about this is that, like as I said earlier, it captures your consciousness, but also like your identity, your entire life, every single moment you’re in pain.
Camille 00:33:44 I mean, I was in pain every single moment for probably, like eight years. Like physical pain. And how you eat, how you sit, how you walk. Like it just takes everything. And so after my surgery and I was healing and even before, for years I had done a lot of endometriosis advocacy and my entire identity had become attached to endometriosis. And as I healed and I got better, which was something that I didn’t really know or think would ever happen to the degree that it has. I’ve had to do a lot of work, whether it’s in therapy or it’s almost like soul level work, to like, understand that the healing from the depression of having endometriosis is realizing that I did get better. I’m not as sick as I was, and I think so many people that have surgeries and have successful surgeries physically that still have a lot of pain. I think it’s really easy to get stuck in that model of like, I’m a sick person and I have pain and I’m always going to have pain.
Camille 00:34:44 Or does that make sense?
Dr. Shanti Mohling 00:34:45 Like, absolutely.
Camille 00:34:47 So releasing that and I am healthy right now and I’m not in pain right now. And so that is where I’m trying to live. And I don’t want to go on social media and talk about even that’s what I’m doing right now. But like so many people, like, I feel better now. Let me talk about how I was in horrible pain for 15 years. I don’t know, it’s okay to put that down, I guess.
Dr. Jessica Drummond 00:35:11 Right? I think that because of how this system is, we require I’m sure it’s very. Yeah. And because of how the system is, we require so much of people with chronic diseases to do the advocacy work, right, because no one else is really doing it. I’ve definitely seen that over the course of my career, that that identification with the disease itself can be really challenging. And that sensation that you’re very responsible for moving the ball forward and helping the people behind you and all of that. And I think what you’re saying, Camille, is so important because people can, even in the midst of chronic disease, fully heel, heel, partially heel some of the time, have better days, have worse days, and you as an individual get to decide you don’t have to carry this whole torch if in this moment you don’t want to, or it’s not helpful for you.
Dr. Jessica Drummond 00:36:10 I think that’s a really valuable thing to say because especially I think for people of your generation and younger, there’s such a deep connection with how you are in public, on social media and all of that. It’s almost, again an integral part of the identity that you can put it down anytime you want to. And I think that’s such a valuable thing to share. So thank you for that. So, Doctor Maling, let’s say you’re speaking with, you know, someone who’s navigating this challenge of trying to find some skillful support for endometriosis. Ideally, the first thing they would do would be to find your office. But if they either live halfway across the world or they can’t for whatever reason, what kinds of things would you encourage people to look for in the surgeon member of their team, if you will?
Dr. Shanti Mohling 00:37:01 Yeah. So that’s such a tricky thing because gyn oncologists are the surgeons outside of sort of these endo specialists within gynecology who have the skill set to absolutely remove endometriosis and deal with this type of disease, but I would say so few gynecologists would remotely touch diaphragmatic disease or invasive bowel disease.
Dr. Shanti Mohling 00:37:27 So when that occurs, when those symptoms are present, you have to have a general surgeon who’s comfortable with that type of disease with endometriosis. I think also in terms of social media, there has been such a movement over the last decade of educating patients, and patients have educated physicians to realize that we had not been really taking good care of this condition. One of the beautiful things that happened for me early on with social media using my Instagram platform, I would post about bowel disease or diaphragmatic disease and the extent of it and what can happen and what the symptoms are. And I had a patient from Africa write to me, send me a DM thanking me because she had seen this information. So she went to a surgeon and said, I think I have it in my bowel. And in her mid 30s she finally had a bowel resection and finally feels better and had this disease removed. So she knew from social media that she might have this thing. And so she went and found a surgeon who could do it, and it changed her life in the States.
Dr. Shanti Mohling 00:38:42 One of the problems is that we have a lot of gynecologists who don’t really believe endometriosis is something you should treat surgically, or that it’s even really much of a disease. And sometimes it’s actually hard to see. It appears kind of atypical, and sometimes I’m even like, God, I hope that I’m doing something right here to help this person because this looks not that bad. And yet you get the pathology, it’s endo, and the patient feels better. So I’ve learned it’s kind of like my own biofeedback what to remove. So if you’re somewhere where you don’t have access to someone who does this every day, you can at least try and get a diagnosis. And then you can begin to work toward how you’re going to have it treated. And the diagnosis, like, for example, I think in some of the European countries, you have a lot of gynecologists who know they need to diagnose it. They take lots of photographs, they do a laparoscopy, they make a diagnosis, maybe a biopsy, and then they are sent toward a center where they can actually be cared for.
Dr. Shanti Mohling 00:39:39 Unfortunately, we don’t have that kind of system. And insurance doesn’t really pay for five hour surgery for advanced extra pelvic disease. So a lot of the docs are out of network, which makes it less affordable. But if you know you have deep infiltrating endometriosis, you do have the option to try and get a general surgeon on board or a gynecology oncologist who might be on board to try and remove your disease. It’ll be a little different from someone who focuses exclusively on endo, but it might be beneficial. So I should also add that cardiothoracic surgeons, for the most part, I think, don’t believe that we should be respecting this disease and are sort of horrified at what we’re doing. That’s their domain. I mean, I’m definitely stepping on the toes of cardiothoracic surgeons when I’m removing disease from the diaphragm. And so often they’re the ones who get called when a person has a pneumothorax in the E.R. and has it because of endo. And they do a pleura disease, which scars the diaphragm to the lung and don’t remove the disease.
Dr. Shanti Mohling 00:40:50 So the patient may no longer have pneumothorax, but they’re still going to have that monthly pain of that endo that’s now you can’t even find it glued into the thoracic cavity. So I think beginning our role is not only to educate other gynecologists, but general surgeons, that this is disease that needs to be respected fully and respected because it can be very invasive and can even completely occlude the bowel. Cardiothoracic surgeons need to understand that this entity causes pain, not just pneumothorax, and that pain is something that we need to acknowledge and treat. So I don’t know if that really answered your question. I think it’s really tough because we don’t have enough surgeons who want even acknowledge it and let alone treat it. And that’s partly because it’s not well reimbursed.
Dr. Jessica Drummond 00:41:40 Right. And so I think part of the advocacy that those of us who are clinicians, pelvic physical therapists, you know, nutritionists in this field, surgeons, gynecologists can continue doing some of that reimbursement advocacy work. And that’s some of the work that Shannon Cohn is doing.
Dr. Jessica Drummond 00:41:57 And her team, because I think you’re exactly right. You know, the challenge is that within the system we don’t have in the United States, very many comprehensive endometriosis centers, and none of them are really like a publicly supported entity. So they’re all private systems. So as we wrap up, Camille, I just want to thank you for sharing your journey. And, Doctor Malling, is there anything else you’d like to share that I didn’t cover yet today?
Dr. Shanti Mohling 00:42:32 So I think that one of the most important things is that people out there listening to this podcast hear what Camille had to say, that she believed in herself. She knew there was something wrong, and she kept going to find an answer. And she kept until she got treated. And that I think so many, many, many, many patients out there are gaslit not by just only practitioners, but their families, by their mothers who also had painful periods, by their spouses who are tired of them being in bed for two weeks a month.
Dr. Shanti Mohling 00:43:12 And so having to carry on and believe in yourself and find answers and get treatment is really hard to do when you’re in pain. And I think that knowing that there are people out there, more and more people now who doctors, providers who really want to help treat this condition and that we’re there. And I think that there is a role of social media, like you mentioned, Shannon, who is a friend of mine. I adore her, her work is incredible. She’s done a lot in terms of her advocacy to spread this word on such a global level, even, and I think Nancy’s Nook has done a great service as well. There are over 100,000 people on that site that now have a deeper understanding of this disease, even. I mean, 20 years ago or 30 years ago when I was finishing my residency, I really didn’t think Endo was much of a deal. I didn’t really get it. And part of it is that we didn’t have as much laparoscopy. So it’s much harder to see when you do an open surgery.
Dr. Shanti Mohling 00:44:19 And now with robotics and laparoscopy, it changes the landscape. We can really identify it and see it in a way that we couldn’t a couple of decades ago. So I do think that there has been some progress. And then the final thing I want to say is that if patients are listening to this and they have been asked to do research. One of the reasons we don’t have enough research is partly because it’s hard to recruit patients. And I know when I did my research with intestinal permeability, there were patients who signed up, but they didn’t want to collect their urine for six hours. You know, that was just too much of a burden. And so it is very hard. Or people don’t want to get their blood drawn or it’s too much. They’re dealing with pain, and I want to ask people to take that extra step that if there’s an opportunity to be a person, a patient in a research study, that you think about the generosity that that is for other people with the disease. Yeah.
Dr. Jessica Drummond 00:45:15 Yes. Thank you for that appeal. So go ahead. Yes, please. Yeah.
Camille 00:45:23 I wanted to thank both of you because I had one of those moments where I’m like, sitting here and it’s 2024 and I’ve healed from this surgery and I’ve healed from all. And I’m talking to my surgeon, you know, and Jessica and both of you have helped me like, I wouldn’t be where I am now without either one of you. And I didn’t know that I was going to find Doctor M’ling. And I didn’t know that I was going to be lucky enough to work with Jessica. After I saw Doctor M’ling and I saw Doctor Merlin for like ten months after my surgery for all kinds of injections and, you know, treatments and like, how do I navigate this? And then after that, I went to Jessica and worked, did her program for endometriosis and nutrition and all of this and all this healing. And like, I just wanted to thank both of you and acknowledge that what Doctor Mullen was saying about having hope and not giving up.
Camille 00:46:22 I’m really stubborn, and I was really angry that I was so sick and I it felt really unfair. And I know so many millions of people feel that way And just if you can find a way to take all of that anger and fuel it into finding the care that you need, you can feel better. I’m not cured. I’ll never be cured. But I’m 31 and I feel better than I felt since I was 14 years old, so like there is hope to feel better.
Dr. Jessica Drummond 00:46:59 Yeah. Thank you so much for saying that. Yeah. Well, thank you so much for being here, both of you. Camille, your story is so inspiring and hopeful, and I think it’s also a credit to you, as you said. I mean, you have to have tenacity in the system that does not respect. You know, we live in an ableist society. We live in a health care system that’s very difficult to navigate and very expensive, and requires a lot of labor on the part of the person who is sick.
Dr. Jessica Drummond 00:47:30 And so you’ve done a lot of that work, unfortunately, but it served you well. And Doctor Maling, I think you are really being innovative in the space of not just surgery and surgical techniques and looking beyond the pelvis, but having that collaboration with integrative clinicians like myself and pelvic physical therapists and other manual therapists to really think about the pre-op and post-op experience from a complete mind body perspective.
Dr. Shanti Mohling 00:48:03 Thank you. Thanks and thanks for your work as well. A pleasure having the conversation today.
Dr. Jessica Drummond 00:48:08 All right. Great. Well, we’ll put all your links in the show notes. Thanks, everyone, for being here. And we’ll see you next week on the Integrative Women’s Health podcast. That was such a beautiful and hopeful episode. I so appreciate Camille and Doctor Malling for sharing their time with us here on the Integrative Women’s Health podcast. I really think that what we can take away from this as integrative and holistic practitioners, wellness professionals, health professionals and coaches working with women, navigating any complex chronic illness, but especially one that is so physically painful, is that there is this deep emotional pain.
Dr. Jessica Drummond 00:49:00 We cannot separate the body from the mind. So as people are navigating complex chronic illness, while some of their emotional challenges, some of their trauma history, and we talked a lot about that in doctor Iris Warbucks episode, and we also touched on Shannon Cohn’s episode, you can go back and listen to both of those actually. Doctor Orbach I believe is coming up after this soon. So the history of trauma and of emotional challenges can, as we know from work such as Gabor Matic and some of the other mind body experts when it comes to pain being a physical expression of emotionally traumatic experiences and sometimes also physically traumatic experience. And I think what we learned in this episode is the opposite can also be true. I’ve certainly seen this in my practice that people who are living perfectly wonderful lives, as Camille experienced, you know, at age 13 and progressively worsening for the decade beyond that and more 15 years beyond that. She had an experience of deep, constant physical pain, that physical illness and pain and, you know, tissue injury and damage and ultimately impact to the nervous system can be a part of what can cause the emotional symptoms that people with complex chronic illness and especially complex chronic pain navigate.
Dr. Jessica Drummond 00:50:46 So I think we sometimes have to be very patient with work with our clients and keep unappealing the onion because things that we may have thought originated more from an emotional stressor could very likely have started with the onset or a trigger for a physical disease process. And we really just can never separate the two, especially if they’ve gone on for a long time or if they were acutely traumatic. You know, we just can no longer is it responsible for any of us to practice as if the body and mind are distinctly separate beings. And in every case, people navigating complex chronic pain need physical symptom and physical physiology and cellular health experts on their team. And they need emotional health experts on their team as well. And many people who are actually bridge that. People like somatic therapists, for example. And I think all of us, no matter what our practices, you know, even if our expertise is more grounded in the emotional or more grounded in the mental or cognitive or more grounded in the physiologic or cellular we still have to think of our piece of it being connected to the whole for the sake of the patient.
Dr. Jessica Drummond 00:52:17 And I think the other key thing to take away from this as a practitioner, and of course, we talk about this all the time. I mean, this is the cornerstone of women’s health coaching, but I can’t help but highlight that, Doctor Mullin said. When you practice old school, when you sit and listen, and I recognize that many of us don’t have that luxury in the current health care system in which we’re practicing. And, you know, clinicians are under a lot of tremendous stress as well. This is why health coaches are invaluable and essential to the traditional medical system that we’re navigating these days. But as Doctor Mullins said, if we listen well and skillfully, which is a cornerstone skill of health coaching the client, the patient will tell you everything you need to know. And that’s hard to do. But it’s a skill set that can be developed and practiced and improved upon. So you have a little bit of, I hope, learning and things to take away from this episode to bring right back to your practice tomorrow morning as a health coach, as a clinician, as a practitioner of any stripe.
Dr. Jessica Drummond 00:53:37 Thank you so much for being with us today. All of the links to learn more about our Endometriosis Certificate program. Doctor Mullings work her social media, where she does a lot of free education can all be found in the show notes. Thanks so much for joining us today on the Integrative Women’s Health podcast. I’ll see you next week. Thank you so much for joining me today for this episode of the Integrative Women’s Health Podcast. Please share this episode with a colleague and if you loved it, hit that subscribe or follow button on your favorite podcast streaming service so that we can do even more to make this podcast better for you and your clients. Let’s innovate and integrate in the world of women’s health.