Ep 57: Having a Hysterectomy Does Not Cure Endometriosis!! Everything You've Wanted to Know About This Condition From An Expert: Dr. Shanti Mohling

Hey ladies, it's Kyle and Candace back for a new series of women talking frankly where you can count on us to take our acronym WTF to New Heights and bring up all those questions we've been afraid to ask ever since we were kids and got our first period to now as grown women asking ourselves what's happening to me, my energy, my sleep, my libido, what can I do to feel like myself again? At Women Talking Frankly, we promise to ask those burning questions out loud and dig deep for the answers you've been waiting for. Join us the first Wednesday of every month where we'll be talking frankly with some of the brightest minds in women's health who will open your eyes and blow your mind in a good way. Hi Candace, how are you today? I'm fine. How are you, Kyle? How are you today? It is a gorgeous day. We have been blessed this spring. Yeah. Oh my god. We have had the best weather in the northwest. Yesterday was 76 degrees, which is 83 in Portland. It was 83 yesterday. We played golf and we were dying. We were like, oh my god, we're such little babies about the heat in the northwest. We don't want it to get above 75, I don't think. 75 is good. I know, it's so fun. But it's so nice that you came into town. We have a lovely drive thanks to you telling me which way to go. I know, a nice way. Lots of farmland and green, you know, if ever we are not deprived of the use of green, I sometimes think it compares to Ireland, you know, they always. I know. They always brag about Ireland has 40 shades of green. I think we must have 45. I think so. Yes, let me get these. Let's be those Irish. And this time of year with all the Azaleas in the road to Denver, oh my god. Wow. Everything smells good. I'm so excited to be here with you. Before I went to medical school, I thought I would become a specialist in pain. And it segwayed into a love for delivering babies and surgery and taking care of women. And for 15 years, that is what I did. And then I wanted more. I was in a small town in northern New Mexico. And also it was 50. And it was exhausting to be up all night delivering babies. And I still wanted that kind of intimate care with my patients. And I recognized that there was this thing called robotic surgery. And when I was in training, there were no robots. And so I'd never even seen a robot when I applied for fellowship. And so very radically at the age of 50, I applied for a fellowship. And did a fellowship in minimally invasive gynecologic surgery. And that training was very focused on endometriosis. And that really is where I began the ultimate funnel of where my career is today. That's amazing. Well, so interesting to hear you say that because I don't know just to jump in for myself. My background was I had to the same thing as you. I had a French degree. I took zero science classes as well. I got out of college and I was cooking restaurants with no job. And I realized, oh, I think I'll become a nurse. And I had as you like you did. I had to catch up. So at the age of 27, I entered nursing school. So there's so many lessons here about women and the roles we play. I remember meeting you in 50 when you went back to school, become a laparoscopic or a minimally invasive surgeon. It just goes to show that you're never too late just to say. So that's why you're not too late. You're not too late. You're not too late to say. What exactly is in the media? matrices and tell us a little bit about its background, I guess. Excellent. So I think that it is widely misunderstood what exactly it is. And part of that is because many gynecologists kind of misunderstand it as well. So the lining of the uterus is called the endometrium, right? When you have cells that look kind of like those same cells outside the endometrium, like in the wall of the uterus, on the ovary, in the pelvis, on the peritoneum, on the diaphragm, very many places, even in the lung cavity, then it's called endometriosis. But it is not endometrium. It is endometrium-like. Okay. And if you look at it under a microscope, it's still going to look like glands and stroma that look just like the lining of the uterus. But biochemically, and how it acts is different. And in patients with endometriosis, the cells that line variators act a little different also. And you'll find that these women have heavier periods and significantly more, obviously, dysmenorrhea, painful periods from the stuff that's outside, but also the heaviness is only coming from the lining of the uterus. So it's a little dysfunctional too in these patients. So really important to think about traditionally, we conceive that endometriosis is retrograde menstruation. So you've got uterine lining and you menstruate, some goes out the cervix and vagina, some goes out the tubes. This happens in 90% of women. But 90% of women do not have endometriosis. So the thought then becomes, there's some other potential source for why we get this disease, right? And one theory, which I believe is that it develops embryologically. So when you are in utero and you have your cells forming the reproductive track, those cells are going to migrate down through the through the selomic cavity of the origin of embryogenesis. And some of them may not quite make it to the uterus. And so they follow the same track and you find endometriosis often along the uterus on the pelvic sidewalls. And even on the diaphragmatic surface, all areas where those embryonic rest cells or preendometrial cells are traveling, migrating in embryology, in development. And so then by the time a young woman hits menarchy, she begins to have increase in estrogen, which feeds the lining of her uterus, her uterine cells or cervix or vagina. But it also feeds these extra cells that maybe didn't make it trying embryogenesis. So that's another theory. And those of us who do excision surgery tend to believe that if we excise it, it doesn't recur because it's not retrograde menstruation. It happened at embryogenesis. So if you excise it, 80% of the time, there's no recurrence. If you burn it, it recurs all the time because you don't really get the disease. So is it, so are you saying it's a genetic thing? Is it, I mean, is it hormonal? Is it all those things? All those things? Immune related? And the epigenetics? It's all those things. And so, you know, so is cancer, right? We have genetic predisposition. We have an environmental impact. We have developmental impact. And maybe an immune function and a gut health impact, all of which may be quite into the situation where a person develops cancer, right? So you might have very little pre-genetic predisposition to endometriosis, but you have this really like horrific background stress, cortisol, poor food, contaminated water, whatever things. And you might still get it. Or you might have a small predisposition and really healthy environment and not get it. Or you might have a large predisposition. And, you know, most likely you're going to have it. So in conjunction with that, so if somebody does have severe endometriosis and they have a dog, are they likely to pass that on genetically? Or is that something that you don't? Okay. Yes, it doubles the baseline risk from like 7% to 15%. So if you have a daughter and you have endometriosis, you have a daughter. And you're worried about that or you're aware of that percentage of risk that doubling what are there steps that can be taken, because obviously there is this collision of, you know, we're not getting their period sooner. If they've been exposed to, let's say, lots of estrogen in their foods or, or, you know, astrogens are sent. There has to be that. Right. Right. Right. Right. And so these are all like great thoughts, right? And we don't definitively know. We do know, like if I have a patient who has terrible endometriosis, she has a daughter. I ask her to keep an eye on her daughter and, and be alert so that we can make a diagnosis early. And, and I do have patients who bring their daughters in. The, I think, I think the worst I've seen is a stage three disease in a 15-year-old, very advanced disease out of four. And I think that we could see it earlier if we looked, but people are very reluctant to do a laparoscopy on a young teenager. So I've, because when I was 13, 14, 15, I had those leveling periods. My grant, I could not move. I was, but double over in pain. My grandmother used to, you know, back in the day, all we had was my doll. And it was awful. Right. So my grandmother used to eat like schnapps, you know, if she was rushed into taking the schnapps. Oh my gosh. But that's, that's how I could cope. And then I didn't have any problems. And all that went away. And then later on in life, I had went to miscarriages. And I was diagnosed endometriosis in my late 30s, which was an interesting, but I wonder, based on that, looking back at me, let's say, for example, with severe dysmenorrhea. And many of my friends had it as well. Is that somebody that now you'd say, hmm, she worked this person up for endo, or there are other reasons that people could have severe dysmenorrhea that are not willing to endometriosis? Oh, that's a really good question. I think when you have severe dysmenorrhea, that very likely 70 plus percent of the time, it's, it's going to be what we call secondary dysmenorrhea. So caused by something, and usually endo. There can be other things like, like uterine malformations, which are also associated with endometriosis, can cause severe painful periods, infections can cause severe painful periods. And I, you know, there are sometimes when I see patients who anatomically, they are pristine, beautiful, nothing wrong, and yet they have debilitating pain. But when someone, by the side, time that someone comes to me, and they have been usually ignored for years, they've been given birth control pills that haven't helped that have created side effects for them. And they're usually coming to have surgery and have excision by that time. And I do advocate for teens to get diagnosed earlier so that it can be managed and followed. Sure, sure. Do you consider an autoimmune condition? I mean, is that, is that even like applicable to endometriosis or is it another animal in the end of it? You know, it's, it's sometimes to me seems like an immune dysfunction. And part of it is that the disease is associated with tremendous inflammation. And higher levels on markers on, on blood tests, not enough to make it a definitive diagnostic test. We don't quite have that yet, other than laparoscopy and, and very, you know, the diagnosis is made by history, very careful exam, ultrasound, which very often is negative even in the, in the setting of endometriosis. And then sometimes MRI. So, even if all the studies before surgery are negative and the person has debilitating pain, I will often still find endov. What about the hormonal links, you know, the X, what do you, do you do hormone testing and see where their levels are in relation to? So, that's a, that's a really great thought. And I don't, because those studies haven't borne out to be, um, as valuable, like, most of the medications are hormonally based, right? So, the, the main medications made by leading pharmaceutical companies currently are estrogen blockers. Basically, they work by affecting the hypothalamic pituitary ovarian axis. And they either augment or block [BLANK_AUDIO] natotropin releasing hormone. And the ones that augment it create a system where a situation in the body where ultimately it ends up decreasing ovulation. And the ones that block GNRH do the same thing. So there's two kinds of medication that are predominantly used that basically shut the ovaries down, create a state of menopause. And I had someone the other day who had received one of these medications at age 14. It puts you into a menopausal state, deep reaches bone density at that young, young age that some of which is irreversible. And it's miserable. Can you imagine being a 14-year-old where you suddenly have no estrogen? Like what do you mean? The woman you go through, the woman you go through puberty the next million-year-old woman. So the medications aren't ideal. They do sometimes maybe by time for someone. But they suppress disease in the moment that you take them. You can take them for a maximum of six months and sometimes they stretch it to one year or two years at the most. And the side effects, you know, the bone loss ones are pretty much irreversible. And then the disease returns when you discontinue the medication. So it suppresses it but does not cure it. And so I don't use these medications often, mostly because the patients who come to me want to have the disease removed. And they've had all these hormonal things tried without success. So you asked me two questions that I didn't fully answer. One of them was the autoimmune question. And we don't know. I really, I did a study myself, a pilot study when I was in Chattano, good Tennessee. And I looked at patients with endometriosis, patients with pelvic pain, and patients with no disease states no autoimmune diseases. And I did a test for impaired intestinal permeability or leaky gut, which I'm sure you heard of. And I looked at leaky gut in all these patients. And I, you know, to do the test really well, you have to have the person collect through urine for six hours. So I really tried my best to sign a lot of people up. And a lot of people were like, yeah, yeah. And then no one was going to, you know, they didn't drink the sugar thing and do the six hour urine. But I did have enough to reach statistical significance. And what I found was that about half my patients with endometriosis had evidence of impaired intestinal permeability or leaky gut. And none of the controls and none of the patients with pain but no endo, which was a smaller subset, had leaky gut. Virtually 100% of those who had it in my study, which controlled for other autoimmune diseases, because autoimmune diseases are almost always associated with leaky gut, right? So I did see that 100% of those in my study who had leaky gut had endo, but only half of them did. So half of those with endo had it. That suggests this relationship, this association between impaired intestinal permeability, which has to do with microbiome, which has to do with the immune function and endo. But it doesn't mean it causes endo, and it doesn't, and we don't know if endo causes it. But we know there's an inflammatory immunologic disruption associated, but not necessarily causal. Wow. Yeah. So it was a tiny study. And it was published, but not a lot of people talk about it, but I actually think that there is some value to that information warranting more, more effort to study that concept. Yeah. If you were interested in looking into that for causes, what other, I mean, what other suspicions do you have about causes? So what I think, which is my opinion, not, you know, not entirely scientifically proven, but what I think is that there is a genetic predisposition. We know there's some genetics involved. We just don't know exactly what. And like someone with celiac disease, for example, they have a genetic predisposition, but they don't exhibit disease until they develop leaky gut, at which point they get this whole interface with glean antigens and autoimmunity, and they begin to flare. The same is true of type 1 diabetes. It begins at the same moment as you have this massive leaky gut situation happening. So you've got these two genetically premediated disease states that flare in the presence of intestinal permeability. And so that made me think, okay, there's some, there's something going on here. It's, I don't know what exactly or how it works, but I know there's a genetic predisposition, and we know endophanes have this endobelary, this bloating, this gastrointestinal discomfort, and massive inflammation. They experience, and if you look at the cells or the paragonial fluid, it's associated with high levels of inflammation. So I think that there's a link that we don't yet have the answer for. So that's my answer to the autoimmune factor. And then the back to the question about looking at hormonal levels and imbalances that Candace asked. And we think that there is an estrogen dominance in those with endometriosis. So we know that endometriosis cells, unlike regular endometrium, endometriosis generates its own estrogen. The cells actually generate estrogen. So you can be menopausal, and you can have endometriosis, and it's generating its own end, or it own estrogen, right? It's a very small problem. I don't think you could measure it, but it perseverates that disease state, even in a menopausal woman. So that's, this is why progesterone may be a valuable tool. However, what's mostly used throughout the world is progestin, right? And we know there's a very different, like when we think about bioidentical hormone therapy and all the studies that we know about, we know that progestins have relative risk of 1.3 to 2 of increased risk of breast cancer, among other things. Whereas bioidentical progesterone does not. But bioidentical progesterone, as with menopause, has not been well studied for endometriosis. For the same reason, probably, right? Have you tried it with your client? I'm just wondering you said 80% of your patients will be better once the endometrium lining has been removed. For the endometriosis, not the endometrium lining, but the uterus, I don't remove. But the endometriosis outside. Okay, that's important to say. Thank you. So I think before you finish that question, I want you to understand that some of these patients have stage 4 disease that's so advanced that you can't even separate the bowel from the side wall. And you're trying to excise disease, but you have to take part of the the colon with it or even the your part of a chunk of ureter or the side wall. It's so extensive that I don't think you always get every little cell. And I think there are fewer currents in that setting. So in your case, I mean, so obviously the patients who come to see you are mostly more advanced stage patients. But let's talk about people who are who maybe are mild to moderate. Do you think now you and I both know this much much of medicine is practice without evidence base? We do observational things, right? We see that this works. We go, okay, let's try this again and we keep doing it. And that's basically how a really good provider provides, I think, is just knowing that you're doing the right thing. So in that in that case, knowing that women who are probably deficient in progesterone, would there be a place for putting them on a progesterone cyclically as opposed to a birth control pill? Would that be something that could be considered? Absolutely. So by the time a lot of patients who come to me find me, they've been given synthetic hormones endlessly and miserable with them. So they partly have found me because I don't think everyone needs to be on synthetic hormone therapy after excision. Because combination birth control pills, as you too know, are four times physiologic estrogen. Why would I give that to someone who has endometriosis and it's done all the time? It doesn't make sense. So in fact, just a little side thing. Traditionally, gynecologists give patients with endometriosis a birth control pill which has, as you know, very high synthetic or a final extra dial plus a synthetic progesterone. then if the patient keeps coming back with pain and they have endometriosis they tell them they have a hysterectomy that's going to cure them and then we're going to take out your ovaries but you can't have any more amounts because you have endo. Exactly. It's way as we wait. What happened here? An absolute disaster is what it is. It is a disaster. So okay I think that's the first time I've been able to like really articulate that piece to someone who was going to get it. Yeah. Thank you. The two of you. So yes, there is a role for bio-identical progesterone. And so I never put people on things. I have this whole conversation about who they are, what their life is, what their values are, what they want. We excise the endote. Do you want to try bio-identical progesterone? Because I recommend at the very least you do it in the ludial phase so that we can kind of help your PMS. That's there too. And we do allow us or have they had hysterectomy. Then they get estrogen plus progesterone. Always when they've had endo. Even in the setting of hysterectomy. Right. So when let's just I want to clarify for our listeners, oftentimes people think a hysterectomy means taking the ovaries and the uterus but hysterectomy is simply taking the uterus out. And in our country, in our country, what has been classically done for women who've had that done is just putting them on estrogen postmenopausally. And that we all believe here in this room is not okay because most of those women were estrogen dominant before they had their problems and their uterus removed. And they need progesterone plus estrogen to protect the rest of their body. Amen to that. Amen. Yeah. Amen. Especially they have endo. And I have a gal. So I'm a patient of mine that Dr. Fogelson, who was your partner sent to me years ago. And she had stage four endo. She had everything. She had the part of her colon, everything, a mess. And I have her on hormones. I have her on estrogen and progesterone. And she is doing great. So I just want to say that, you know, we do see that, you know, these women who have, they have, like you said, they have postmenopausal symptoms. Many, many they have osteoporosis because they were put on these drugs when they were younger. Is that, okay, I want to back up a little bit on that one. Is that really being done to 14 and 15 years or having these drugs? What are the names of those drugs, by the way, that causes that bone loss? The oldest one that's very traditional used is lupron or depa lupron and depa lupron lasts for three months. So lupron has some great roles in history. I used it for in vitro fertilization. It to suppress everything before you then jumpstart and stimulate for the egg retrieval. But it has is also used for endometriosis. And the other one, there are a couple others. One of the other new ones, which is a GNRH antagonist is called Arlyssa or Elagalix. And there are a few others. My Fimbri is another one. And they, they may have a role in certain, certain circumstances. anecdotally, I had a paramanopausal woman who was referred to me with a large kennelope size endometrioma who'd been managed for two years with Arlyssa. And partly because she was very, very reluctant to have surgery, but had a lot of pain. And I was removing her ovary because it was completely overtaken. And as I got in there, I realized this ovary did not look good. I sent it to pathology for a frozen section. And it showed a borderline tumor, but the final came back as malignant transformation of endometriosis. So this happens maybe 1% of the time with endometriosis, maybe less than 1% of the time that you get malignant transformation. But it is one of the reasons that I wouldn't maintain someone with in their late 40s on one of these medications and not surgically evaluate the situation. And it is also another reason why if someone has a history of endometriosis, I want them to be on progesterone if they're taking menopausal estrogen so that that we are still balancing that out in the hopes of preventing any malignant transformation of any residual endometriosis. But that's kind of another topic. I didn't mean to segway too far, but it's interest, you know, when you're still thinking about the role of progesterone and how important it is even postmenopause if you have a history of endometriosis. Well, how important is it when you have, I'm just trying to understand here. So when you go in and remove endo cells, et cetera, from the endometrium in someone who still wants to preserve their fertility, is that how does that work? And would that be a time when progesterone would, natural progesterone would be in order and estrogen. I mean, again, you referred to something when we first started talking that we should discuss about hysterectomy, not being a cure for endometriosis. So I would take it that you don't do a lot of hysterectomies, here mostly. I do a fair number of hysterectomies, and that is because there is a relationship between endometriosis and something called adenomyosis. And adenomyosis is when these kind of cells that look like endometrium invade the muscle wall of the uterus. And the uterus gets globular and large. And it creates very severe pain with periods and very heavy bleeding. So that is a case where their treatment is basically hysterectomy, most likely. And then I also have, I believe very much in patient autonomy. And if they have suffered for 20 years and say, I don't want babies, I don't want another period. I've been miserable my whole life, I have terrible endo. I don't want another period and I want my endogon. Yes, I will remove a uterus, but I will not leave the endometriosis next to it. Right. And so to really help hone this in, especially for you, Candace, the endometrium is the cells inside the uterus. And I leave those alone usually, especially if someone wants fertility. I do a lot of fertility optimizing endometriosis creates infertility. So I leave those endometrial cells. And I remove all these cells that are outside in the body. Right. Does that help clarify that? Yeah. But I make it, I'm clarifying it partly by the way you ask the question because I think many people don't fully understand that. So it was an opportunity to explain now. No, that's a great question. And what's the furthest away? I mean, I've heard the endometriosis can travel as far away as the lung, the eyes. What, I mean, how do you know how far can go and what can you do about it if it's distal from the pelvic organs? Yeah. So you'd have to, I have only seen it. I treated on the diaphragm. I excised it from the diaphragm and into the lung cavity. That's as far as I go. I don't do it from the eye. No, I know, but it can happen. But that's pretty rare in anecdotal. But it's, but I would say 10 percent of my patients have it on their diaphragm. And they, someone I operated on a couple of weeks ago, for years has had gastritis and this chest is comfort and swallowing pain and has doctors and doctors and kind of written off. She had adenomyosis of the uterus for which we removed her uterus. And of course, I looked at her diaphragm, which had thick full thickness into the lung cavity, but not into the lung. I mean, on the diaphragm. So I removed it. And she's not had the swallowing issue since. So the, the, the, the referred zone of pain from diaphragmatic disease will create gastritis symptoms. Yes. And reflex even. So that's the, you know, the farthest that I see is diaphragmatic disease. I've taken it off that the peritoneal surface of the kidney and liver, but not outside the actual body cavity. However, I have someone coming up who has endometriosis of the umbilicus of her belly button. She does not have really, I don't believe endometriosis inside her body while in interpel this. She doesn't have painful periods. She has an umbilical hernia and she bleeds monthly from her belly button and she has a mask that is consistent with endometriosis. So this is umbilical endometriosis and this is also a thing that she was born with. Wow. So that was definitely genetic. So, so do you see this? And developmental. She's had that baby. Yeah. So do you see when you mentioned before that you had the leaky gut syndrome office often associated, we don't know if it's causal or just associated, do you see other conditions like low thyroid or anything else that could be associated that you see sort of coming up again over and over again with women who have endometriosis? Absolutely. And in the literature, we have an association with a lot of things. So celiac disease, Erler's Danlos syndrome. Many of my patients have POTS, Postural or the Static Tachycardia. Many of them have MCAS, so Mass Cell Activation Syndrome. Patients have associated Hashimoto's, Thyroid Disease, there are a few other things just off the top of my head I'm not thinking of them, but these are associated disease states that the literature has documented, we see an association with each of these things. We don't know why. So correlated, not necessarily causative. Exactly. Interesting. I've heard of Erler's Dan, he described what that is again, I don't know what that is. So it's a collagen disorder and so patients have hypermobility, they can bring their hand all the way close to here. They often have the associated Postural Hypertension, slower wound healing. These patients I often need to manage a little longer in terms of pain management after endometriosis surgery, and as they have heightened sensation of pain, EDS patients also will have increased prolapse later in life following childbirth for example, rates, increased rates of prolapse I should say. So I know people wouldn't come to you with POTS, but if I just am thinking of a client, I did some education with recently who had POTS and the collagen, what is it called? Erler's Dan, I didn't know what to talk about. Dan Lose Syndrome. He has both of those things. So if her doctor was savvy, would he, she not recommend that she look to see if there's some endometriosis. No, not if she doesn't have symptoms, not if she doesn't have pelvic pain, painful periods, but if she does, she very likely has endometriosis. And what percentage of women would you say have endometriosis? The literature quotes over and over again, one in ten, that's what I thought too, however, if you have infertility, it's closer to five to eight in ten, right, probably 70% of patients with infertility actually have endometriosis, causing their infertility. So we talked about how it's so inflammatory, and if you have the lining of the body with all these implants that are associated with these supertoxic inflammatory agents, they are hostile to the egg and sperm, right? So they decrease fertility, increase miscarriage rates. Is there a heightened correlation between PCOS and endometriosis? Do they tend to occur? No. No. Not really. Not really. Not really, even though they are both associated with estrogen, but PCOS patients far more associated with elevated estrogens and elevated, as you know, probably elevated androgens. Right. So is there anything that women can do just in general to decrease the risk of getting endometriosis? I see you said it's embryological, genetic, but if you know as a young woman, what can is her point before, is there anything that we can do with our diet, herbal supplements? Is there any preventative to prevent the. You know, I am so all about the concept of prevention, and with endo, I don't know if you can prevent it. I have seen the healthiest patients who take exquisite care of their bodies and what food they eat and exercising well, and meditation and yoga, and all the things, and they have stage for endo. And so sometimes it's a mystery to me, but what I do know is that every patient with endometriosis who decreases inflammation with diet and supplements is able to tolerate their symptoms better. That was the question I wanted to ask, so quality life improves. So quality of life improves, so I saw a patient yesterday with even an ultrasound I could tell she has stage 4 disease. She had a history 20 years ago of a laparoscopy documenting it, and she's an acupuncturist, so she's managed herself with acupuncture with Chinese herbs and now with glutathione and acetylcystine, two supplements that have been shown to be helpful for patients with endometriosis. So she has a frozen pelvis, and everything is stuck together because of so much inflammation for endometriosis. This is like the most complex form of endo, but she has tolerated this into her forties by careful diet and supplements, and it's allowed her to work, to function, and so forth. But it doesn't fully take away that disease. So are you saying those are women who maybe don't have advanced disease? Okay, I'm going to back up a second. First of all, I also heard that women who have severe dysminemia don't always have severe endo, and vice versa, women who have not such bad cramps in that very severe endo. So is there a correlation between the amount of endo and their symptoms? Or is that not not always true? Yeah, that's an excellent point, and you're absolutely right. You can have stage 1 disease with a tiny patch of endo, and it's debilitating. You can have stage 3 disease and not know you had it until you started having fertility. Right. So my question then was, is it reasonable for women who suspect they have endo to start like a young woman? I say a young woman, you don't want to put on these drugs that may cause osteoporosis. Would she do well on a glutathione, and was it an AC that you said, or would it be reasonable to start somebody like that on those supplements? I think a young person should always try other things before having surgery. And almost always, young people are given birth control pills, as though it's necessary for life, right? But I am. You know, there is some data suggesting that patients who have endo have a higher likelihood of having been put on a pill, but maybe that's because they had pain and they got the pill. So I think that we have no data that shows that a birth control pill is going to prevent endometriosis, but it can make periods more tolerable and sort of allow someone to function and delay getting truly diagnosed, right? Some patients are on pills for years, and then they go off the pill, and they're like, oh my god, boy, it's going on, I can't handle this, and they get surgery, and they have terrible endo. So it may create a suppressive effect, but in terms of symptoms, but it doesn't eradicate the disease by any means. Now, supplementation, really taking beautiful care, anti-inflammatory diet, I don't think that's going to prevent full-on disease, but I will tell you this, when I operate on someone who eats well, who has a normal body weight, who really actively takes good care of themselves, the surgery is so much easier because the tissue lines are still healthier. And when you have someone who has ignored it, doesn't eat well, has generally poor dentition, poor general health, the inside and the endo is, it bleeds more, it's more fibrotic, it's more inflamed and harder to remove, and that's just observational, that isn't hard data, I've never read that anywhere, but I do find that time and again. That's pretty significant observation on your part, I'd say, when you send your patients home and they've had the procedure, what is the monitoring, what is the follow-up? So I'll see them one to four or five, it depends on what they need, usually one or two times after surgery, the first time is pretty early on where we make sure they're doing okay, we go over the results, I show them the video of their procedure so they can actually see what I did, and then when they follow up, I give them a handout about supplements, possible bio-identical progesterone use, and dietary guidelines for a very wholesome diet. And then we also talk about things like physical therapy. pelvic floor PT is in the recovery phase, things that really augment healing. Yeah. Well, I hope that people listening who relate to this will find you because you're looking at all the right places and doing what I have a feeling you're probably pretty cautious too before you go full bore in there. Oh, totally. Absolutely. It's very thorough work out to make sure that it's the right choice, that surgery's the right thing, right? So, I'm just curious. Another person I talked to recently, saddest story she's newly married and is having impossible, just in the impossibility of having sex with her husband, because she has vulvodinia. It's just wondering if that was in any sense related to the presence of endometriosis. Endometriosis. Well, so vulvodinia is debilitating and sometimes I do actually treat this and vestibulitis. And although it sounds horrifying, I treat vestibulitis surgically. So, sometimes vulvodinia is vaginismus, is overgrowth bacteria, is the squamitive bacterial infection. And sometimes it is an area around the vestibule, the opening of the vagina, where the tissue is hyperinflamed, does not respond to topical steroids, does not respond to diet, does not respond to hormonal therapy, and is debilitating for the patient. And while I think for years it felt barbaric to me and it probably sounds barbaric to you, but I will excise a little strip of that abnormal tissue right at the entroidist before and including the hymenal ring. So it up. You think about childbirth. The vagina is so resilient. It heals beautifully. Sometimes you can't even tell I've done the surgery afterwards. Other than that, it no longer feels like ground glass when they pee and they can suddenly have sex and it's miraculous. But it is a very, you know, to think about operating on a young woman's vagina and removing tissue, it sounds so terrifying and yet done meticulously can be life-changing. But an excellent surgeon like you. I'm so happy to hear there's something that can be done. But I make sure that it's not responsive to steroids. It's not responsive to estrogens or bioestriol or any topical or physical therapy and that it is not like I also do Botox to the vaginal pelvic floor muscles to relax them. And that's separate from this to be lightest. So this to be lightest is going to be this and I send the tissue. It's total inflammatory tissue of the vestibula when I remove it. But deep pelvic floor pain can also create vulvidinia. And so releasing those muscles with physical therapy or with Botox can be really life-changing. Well and like and and also I just want to shout out to careful the way you're carefully assessing these people and moving slowly and not jumping first to surgery. You're trying everything else first which is what we all should, you know, think about. Oh absolutely. I mean I'm not going to just do a vestibulectomy on someone right off the bat. I don't know patient in their right mind would just jump in for that. It really has to be like nothing else works. Exactly exactly. And I like your follow-up too. I think it's really it's very heartening and encouraging that you're not just waving your patients goodbye after surgery and you know I can get on my face. So in the long term so when you have these women who have endometriosis they've struggled for many many years. They see you. They finally have pelvic pain relief. They feel like normal people again. Do we see any long-term sequela of endometriosis later in life for these women? Is there anything that other than the scarring? Is there anything harmful they should be worried about? If they don't have it addressed, there are patients who are admitted with intestinal blockages from endometriosis invading their colon for example. But that's also the kind of very aggressive endo and there seems to be a kind that's more on the peritoneum which feels like third degree burn inside your body and then there's the kind that scars everything together and invades organs right and we seem slightly separate like separate entities but long-term sequela of fully excising disease I mean there can be complications sure you could you could have a complication of a bowel resection that would be the same as a bowel resection for some other disease state right so sometimes it invades the bowel so completely that it blocks it and we remove a section of the bowel okay um I maybe I haven't been practicing long enough to see like long-term negative outcomes but I'm practicing long enough to have people write to me three and five years out and say I had a baby finally after years of infertility or I'm I normally a now back rock climbing and after a bowel resection or you know those are deeply gratifying moments um and then there are a few challenges you know where someone has such bad disease that their course of recovery is longer I was so shocked when do you are you familiar with the author Hilary Mantle no well she are you familiar with the trilogy of Wolf Hall the story of Thomas Cromwell oh it sounds great I need to read it yeah well Hilary Mantle won the booker prize for this trilogy of Cromwell it's called Wolf Hall it's been this beautiful series on um masterpiece theater but she was such a writer and she recently died of endometriosis um she had it for some 30 years and she was probably in her I think she struggled with it for 30 40 years and it just amazed me to think I'm listening to you now and I'm thinking it must have created some kind of a huge blockage or it became cancerous or something that she actually any treatment and actually died of it is that yeah how do you know how old she was she was she was I'll say new some information she was probably in her late 60s yeah and and just this brilliant author who was you know world renowned and you would think somewhere somehow someone like you might have been able to say I can help you it just amazed me and so this underscores the fact that endometriosis continues to affect us in menopause yeah if it's untreated um it's it's interesting you bring that up one of my patients who had stage four endo and she did really really well and and she did have hysterectomy, excisionable disease and very very advanced disease she started to track her family history and family tree and she found her great grandmother's um death records and her grandmother died of intestinal obstruction for endometriosis oh my god wow so there's the sequelae that's what I was wondering about because I'm wondering you know these women who have all these surgeries over and oh don't so it's been diagnosed for for a long time then there's been a diagnosis or knowledge recognition of this condition for yes great grandparents would have absolutely but only in the last two three decades have we had a greater understanding that laparoscopy has given us so previously you would open someone up and everything was stuck together and you do their surgery and you probably didn't remove all their disease but you did hysterectomy and maybe took their ovaries out now we go in and we see everything magnified and now we can see early stage endometriosis and actually do something about it because we have this tool this laparoscopic vision that has radically transformed in the last three decades how we address endometriosis it's it's it's incredible so this is eight of the art now currently who knows where we're going next but it truly is and with robotic technology the camera is 3d it's it is the most amazing visualization I have experienced in terms of an ability to really radically excise this disease anywhere from very subtle lesions in a in a young person to very advanced disease yeah I remember when I had I had my laparoscopy when I made my eight thirties and I saw an infertility doctrine he was the he would he explained to me at the time and this is 30 years ago that other surgeons couldn't see the implants as he had been trained to do because they which was interesting I mean if people would like you said they'd open people up you couldn't see them as well as you could with a laparoscope right who did you go to. That'd be Eugene Stoke and he's coast or here here in Portland. I've heard that name. He's retired, right? But yeah, he was one of the first doing that kind of work here in Portland. So that's fantastic. And I had my video, my surgery and he was pointing it out. So he was a pioneer in this. He was a real pioneer. So yeah, it was great. It was really good information for me that I could share with my patients then because I could say, hey, I've been there. I've done this. And I would recommend doing people. My other question for you, one thing we haven't talked about, okay, we have a 10% of women in the general population who have endo. Does it affect people of different ethnicities differently? Like we see in the black population see a higher risk of certain conditions? Absolutely. I'm the worst disease I've seen has been in Nigerian women. It is really prevalent all over the world. And I really can say I have over the course in the last decade had a very diverse population with all stages of disease. But one of the things that you can see I've seen in Nigerian women and if I when I looked in the literature, it's more common in Nigeria is a pelvic ascites associated with endometriosis where the condition of the endometriosis releases fluid. So ascites we associate with liver disease and there's all the fluid in the belly and also malignancy ovarian cancer can create ascites. It's fluid in the belly, right? So this is seen in extreme cases of endometriosis, but not I you don't see it that often. But I had a Nigerian patient who had this society's like like had to drain five leaders of her belly. Oh my god. At which point they diagnosed it with endometriosis. And we do that recurrently. And she had some of the worst disease I have ever seen. Any theories about why Nigerians? Why? I have no idea what what that is or why that is. I don't think we have no idea. I think you can occur in Caucasians, but I've never seen it. There will be mysteries that prevail. So other words of wisdom for us or for our listeners to know about, I mean, what are some of the things that you tell your patients or you're seeing somebody for the first time, you know, just in a gynecological setting. What are you going to tell people? Yeah, so I think I think that it's really important that we not underestimate pelvic pain and painful periods. And that that I think that's the biggest thing is that patients are gasslet or not heard or written off or given birth control pills and antidepressants and not respected and listened to when what they've really got going on is endometriosis. So Kyle is lucky. Kyle, I mean, you had 30 years ago, someone listened to you, you were dealing with recurrent miscarriage and you got diagnosed. So many don't. I had a young woman recently who no one would operate on her because her body mass index was over 50 and she came from Atlanta and I agreed to do her surgery. And in four years, this 28 year old person has suffered silently without relief and told you have to lose weight, all these things that your disease, not that endometriosis could be the problem or she also had a huge predunculated fibroid undiagnosed and untreated that was part of the issue as well, but not listened to marginalized. And so not just someone because they're morbidly obese, but teenagers with pain. Well, period's hurt. Here's, take tons of ibuprofen and ruin your gut and tear some birth control pills right over and over instead of what is the problem? Why does this person actually have so much pain? So I think we aren't responding enough to someone who stays home from school or can't go to work because they're in pain. If that's the case, something going on and we got to check it out. It's so true. I'm as a kid. I remember like I miss, I would miss two or three days of school. That's a red flag. I want you in my office. Let's sort it out. But back then, like I said, we had the mightle. It's just amazing to me. So what I'm hearing what we're hearing today is what we hear with the menopause. We hear with PMS. It's the same thing. Yeah, we're normalizing it. Underheard, not just dismissed, you know. What are the chances of a younger person who maybe listened to this or their mother did and they go in and they say to the GP, we need to be checked for endometriosis here. What are the chances that they're going to follow that a doctor would follow through on that? But they say, well, why? She's, you know, we'll give her the pill or she just has heavy period. You know, I would think that would be especially in younger people. That's how I would suggest. This is the problem that we haven't educated our gynecologist or our pediatricians well enough. Right. I mean, I was taught that as a young nurse practitioner back in 1988, back at Parkland Hospital. If somebody has dismantling our bad cramping, put them on the pill. That's the first line of therapy. Exactly. Right. I don't know if that defaults. Do you think that has changed in the, in the, it has not changed? Oh, so that's terrible. Wow. But there are people like you out there. Are they far in few and far between? Yes, which is why people come from all over the country. Because it's hard to find someone who will excise and particularly who will excise to crazy disease. Do you think there's a movement like, I mean, I'm, I'm sure you're part of ACA. I'm sure you're part of all those organizations. Is there a discussion on the national level to, to bring this kind of education to young budding doctors? Absolutely. So in American Association of GYN laparoscopists, we are all about endometriosis, very much so. American College of the GYN is still a little old school. Don't, don't operate on teenagers, give them birth control pills. It's definitely still towed the line. Oh, yeah, it's hard to change. It's hard to move a big ship, isn't it? And mostly what general gynecologist will do is diagnose laparoscopically, burn a few things, and then tell the patient they need one of these GNRA Genilox and suppress their hormones. And that's, that is what happens. Sometimes the work in front of all three of us feels so big. It's like taking this ocean liner and, and steering it in the, and it's by inches that it moves into a new direction. But I think what we say to ourselves is that we can't give up number one. Number two, what we are doing is makes a difference. Right, and we hear the, and we hear the, and we hear the positive feedback that we all hear when somebody gets relief from the therapies that we offer them. And, and, you know, okay, I'm going to turn it back to you to just for a minute. Do you have you had success working with patients who think they have endometriosis and working with them with bio-identical hormone therapy? I don't know if I can answer that. Well, the post-menopausal person for sure. Right, yes. And I would say that, yes, I would have people with dysmeteria or PMS, very severe menstrual symptoms of what I put on gestural, instead of a birth control pill that did better. So yes, I've had that experience. And my thing is I'm an, I'm an health educator. So I'm really talking more about, you know, the, I would talk about estrogen dominance based on test results. I do the testing. And if I saw that, if I saw low progesterone, if they're on birth control, if they're exposed to toxins, if they have inflammation, all of these things would be mentioned. And, and then the lifestyle changes, modifications that could be made. And then a referral to someone like you, now that I know you, but I wouldn't, I wouldn't presume to take on that sort of treatment. But I am certainly all about, let's increase awareness, like we're doing today on this podcast to discuss various ins and outs of this very mystifying and terrifying disease, really. Yeah, totally. Yeah. And, and I asked, in part, because I do think that there are patients who have this disease who really don't, they're not ready for surgery, and they really want to maximize their well-being. and biomedical hormone therapy can be a piece of that and so - Yeah, I think that there's a really important role for that. - I hope that we see some studies on that. But of course, those studies are usually funded by drug companies. So it's probably not coming very soon. - Probably with the interview. - Well, you can set up your own little, you can try to get your own IRB and then just get. - Yeah, yeah, that's like really hard. So I do want to say one other thing. And that is that if someone does have to lose their uterus or their ovaries because of such massive disease, that I do recommend they do bioidentical estrogen, topically oral progesterone, because Kyle taught me to use progesterone orally. And testosterone. - Yeah, and piscine. - And along those lines, I also have had a number of patients who are transmasculine patients with terrible endometriosis. And so I want to be clear that when we're talking about women, we would, I would include people born cis female who are transmasculine who can also have and are also terribly marginalized. - That's really true. Thank God you're here to help them. That's all I can say. - How complicated, Michael. - I know it. - The complications are endless. - Before we end our podcasting, which has been actually, I just was writing on my little notes to Candace, that you are a great guest. I mean, there are guests and you are so wonderful, first of all, because you're non-judgmental, you're so freaking knowledgeable, and you just have this, and you have that acting skill that I didn't know you had. - Which is amazing. - And you answer questions really well. - Really well, you go. - Oh, thank you. You don't talk over us. You know, you answer the question so beautifully. So thank you for sharing, first of all, all this wisdom and knowledge. And I was just going to say I think all of us wish we would have done start of this work a lot younger, so we had more energy to keep going, but we're going to not going to stop. So that's good. We always like to talk about a couple of things in our podcast. One of them is some things that we, a favorite thing, or something that inspires us. And I happened to just have a little favorite thing here that also inspires me. She've all heard of Cheryl Strayed. She wrote, you know, wild. She also wrote a little, but she was in a podcast called Dear Sugar. She's amazing. But she also wrote this little book. I don't know if you guys know that it's called Brave Enough. Have you seen it? So when I give this to all young women, or all women who need a little bit of help throughout the day. And she wrote, she has a cup. She has these little like essays or little quotes that she puts in here. And one of them is, Candice and I were talking about the power of no. She said no is golden. No is the power that the good witch wields. I love that. And then she also talks about, you know, you cannot convince people to love you. This is an absolute rule. No one will ever give you love because you want him or here to give it. Real love moves freely in both directions. Don't waste your time on anything else. I mean, there's a little little kind of quotes that she has in this book. But I love this book because it's constantly full of like powerful and courageous affirmations. So Brave Enough. Small little book. And I said, I've shared it with so many young women. So that's one of my-- Oh, that's wonderful. That's a gift. Thank you. I can think of, I should have it in my office. Exactly. It's one of those books. And you can pull it out at any given moment. Say to somebody, I have the quote that will help you today. Nice. I think I wasn't thinking about an inspiration yet today. But I am inspired by the idea that we, we discussed in the inception of this podcast, is that people, if we can do anything, it is to help people know what questions to ask. Yeah. That you've got to get the answers you need. You've got to ask good questions. And ask questions. Just ask questions. I mean, women don't necessarily do that. They don't-- I myself have been dismissed when I've come in with a bunch of questions and have the feeling that the doctor is quite annoyed with me. And like the comic, you just-- I just cartoon. They're saying, "Okay, so what do you think is wrong with you?" Yeah, there's a cartoon. It's one of the things I subscribe to is the Instagram, the New Yorker cartoon. And there was this cartoon of a woman on an exam table. And the doctor says to her, "So what do you think is wrong with you?" And I put that as a funny Facebook post. I said, "When is any doctor ever asked you that?" It's always a tough down, right? And I used to have on my wall. And I don't know where I got that quote to your point. I had a quote on my wall. It said, "If you want a great life, ask great questions." Yeah, and it's, you know, it's-- we do. We need to ask questions. I think we have to insist. I think we have to insist upon it. And one little last thing, we always talk about a favorite thing. Well, let's see if Shanti has an inspiration for a favorite thing. Or a WTF moment with you. Well, I didn't come prepared with any cute quotes. But I lately have been-- I've been-- I lost my mom in January. And it stimulated a lot of dreams. And also, within that, has been this tremendous gratitude for my friends. The friends who I've had over the past decades, who are continuing to show up for me, right? They don't live here. And yet they remember to be part of my life, and uphold me still. And so-- And they're my women friends. And I wanted to just-- you said, well, favorite things. Well, my favorite things are all my girlfriends. Hi. [INAUDIBLE] Wow. I tell my daughter that all the time. I say, build your tribe. Build your tribe of women. Men will be there. And men are important in your life. But your tribe of women is what carries you through. And it comes through all the generations, all the different cultures we read about. Native American women with the red tent. All those things are women gathering together to support one another. Because we have to bear the brunt the most. Right. We do. We have to say that kind of quietly, but it's true. So when you have friends that are in far-fong places, as I do, too, I have some of the friends that I've had long lasting friends are not living in this country. Or they live in different states. My daughters live in California. So the challenge is staying close and seeing them enough. We talk about nourishing our relationships for happiness. And I think that effort is something we have to constantly be finding a way to gather, to get together, to make special times so that we can, you know, bask in the love and the friendship. And I think we all know that there's those people you meet, but are far-fong. But it takes half a minute to get back into the sync with them. Because they're special. There's no way, you know, oh, oh, we got to catch up. You're right there. You just start the sentence with "so" anyway. And Kichonji was called, the listeners don't know this, but when we were getting ready to talk today, Shoggi said, "Canis and I were banjering back and forth just as we do." And she said, "You guys obviously know each other really well." And that's the kind of thing that we're trying, women and our tribe have. We share that kind of-- We're a comfort to each other. We are a comfort to each other. It's a very complicated world that we have to navigate. I feel really blessed to-- I mean, I'm going to say this because I mean, honestly, we all had different backgrounds before we got into the work we do now. And I'm going to say, I'm really thankful that I chose the work that I do because being around women over and over again has been the richest part of my life, I think, in many ways. Absolutely. And having children has been, you know, just that shared womanhood has been amazing. Right. And in the work that you do with mostly menopausal women, that you've aged with them, you're kind of-- I'm sure that many of them have kind of been with you as you've grown up together, moving into menopause and so forth. We call ourselves the Crohn's now. [LAUGHTER] I'm there. [LAUGHTER] Isn't it great? Isn't it great, you know? And Julia Louise Dreyfus has a podcast that I love to listen to. She interviews women who are older and she calls it "Wiser Than Me." That's another favorite thing, by the way. If you want to get to a great podcast, the first person she interviewed the first year was one of my favorites, Jane Fonda. And then the last person of that season was Carol Burnett. Both of them are incredible. I mean, if you get a chance and you have time on your walk or whatever you're doing, and it's an amazing podcast, "Wiser Than Me." You know, that's where we're at. I hope that we can get-- Well, I would love to talk you up so that other podcasts would pick you up because this information is so important and it does not get out there. And well, you have a big Instagram. I do, and you send me the link and I'll post it on my Instagram too. We love that. We're going to share you with the world, Shawn D. The world needs to know about you and the work that you do. Oh, thank you. Likewise. So that's the-- I think-- I mean, I have a very high percentage of females following me. Good. We'll thank you. Although I have a lot of international doctors following me too, but-- Okay. That's great. It's awesome. We're powered to you. Yeah, we love it. Thank God. It's strange. I don't know how it all happened, but, you know-- You've had that. You just put yourself out there, right? Exactly. You say yes when you're supposed to say yes. You say no when you're supposed to say no. Well, we should mention you said you had a viral post when you made that statement. Oh, yeah. It's direct to me. cure endometriosis, so keep making those out of astonishing stances and changing the dialogue. Yes. Yes. To our listeners, before we got started today, we were talking about Shanty's Instagram following, which went crazy last year. She posted a post about his direct meet and she had a million views. That's amazing. I think the reason is, if everyone shared it, the reason is that it resonated and the reason it resonated is too many women have had to direct me for the wrong reason and they still have pain and no one walked them through it and no one removed their endometriosis along with the uterus. Some of them didn't need to have an endometriosis, maybe some of them did, but the whole that was going to cure their endometriosis and it didn't. Yes. And getting back to our message for women, then make sure that you go and ask the right questions, if you get the answer that you don't like, keep asking, go to somebody else. Exactly. Find that. That's really important. And Shanty tell us where women can find you. So I'm at Northwest Endometriosis and pelvic surgery in Portland, Oregon and my social media handle is @ShantyMoleMD. How do you spell your last name? M-O-H-L-I-N-G. Okay. We'll post that in our show notes for our listeners and we'll put it in our newsletter as well. Shanty, thank you for spending so much time with us today. Yes. It's wonderful. It's so great to see you, Kyle. I'm great to meet you, Candace. Yes. Same here. It was a great interview. Thank you again for the best. As we closed out our podcast episode, we want to leave you with a few thoughts today. It is not uncommon to feel confused and frankly overwhelmed by all the information that we are exposed to pertaining to women's health and particularly hormonal issues. But the good news is that menopause is really having a moment and you are not alone. You have options and there are many answers that are safe and sustainable. At Women Talking, frankly, we are dedicated to having conversations with experts who can help you navigate your own path to health and hormone balance. So don't forget to sign up for our newsletter and subscribe to our podcast so that you can stay up to date with the latest on Women's Health. We are your host, Candace and Kyle. And we thank you for listening today and for joining our community.