Endometriosis Unveiled: Exploring a Misunderstood and Devastating Disease with Nancy Petersen, RN
March 2, 2024
About Nancy Petersen, RN
Nancy Petersen, RN, is one of the most recognized endometriosis advocates of our time, having spent decades engaged in personal and professional efforts to connect women to better care. She is also a woman who has experienced endometriosis herself.
Nancy has accomplished many major milestones throughout her career, not only on behalf of her own medical patients and by universally expanding the role of nurses, but for women and girls with endometriosis globally through advocacy of complete removal of endometriosis.
Nancy continues to tirelessly educate lay, media, and professional audiences on the “modern concepts of endometriosis,” and has helped improve the quality of life for countless women all over the world through her outreach and education efforts, as well as establishing “Nancy’s Nook”, a Facebook resource group for disease education, discussion, and support.
Links & Resources
Nancy’s Nook Endometriosis Education on Facebook
The Endometriosis Summit - March 8th-10th 2024 (In-person and Online) www.TheEndometriosisSummit.com
follow along with the episode transcript
Dr. Lotte [00:00:00] Welcome to Dr. Lotte: Science with soul, the podcast that transcends the boundaries between science and spirituality. I'm Dr. Lotte, your host, a physician, medical and psychic medium, ancestral healer, keynote speaker, and award-winning author of Med School After Menopause The Journey of My Soul. This podcast finds its roots in my own extraordinary life experiences through my personal odyssey. I have discovered our profound connection within a divine tapestry of existence. I have traversed the realms of illness, healing, and transformation, propelled by two near-death out-of-body experiences that bestowed upon me the extraordinary gifts of clairvoyance, clairaudience, and clairsentience. Guided by this sacred calling, I embrace the pursuit of medical school at the age of 54. Prepare to be uplifted, transformed, and awakened to create a path to healing your own life physically, emotionally, and spiritually. By bridging the gap between science and soul.
Dr. Lotte [00:01:19] Welcome back to Dr. Lotte: Science with Soul. Today's guest is Nancy Petersen, R.N., who is one of the most recognized endometriosis advocates of our time, having spent decades engaged in personal and professional efforts to connect women to better care. She's also a woman who has experienced endometriosis herself. Nancy has accomplished many major milestones throughout her career, not only on behalf of her own medical patients and by universally expanding the role of nurses, but for women and girls with endometriosis globally through advocacy of complete removal of endometriosis. Nancy continues to tirelessly educate lay, media, and professional audiences on the modern concept of endometriosis, and has helped improve the quality of life for countless women all over the world. Through her outreach and education efforts, as well as establishing Nancy's Nook a Facebook Resource Group for Disease Education, Discussion, and Support.
Dr. Lotte [00:02:31] Welcome back to Dr. Lotte: Science with Soul. Today I am so excited because I have a very, very special guest, Nancy Petersen, and I cannot wait for her to share her knowledge about endometriosis with you all! Because it's something that consistently falls through the cracks, and I see a lot of people myself that fall through the cracks and have seen many different surgeons, have seen many different doctors, and it consistently, um, is mistreated. So I am going to introduce you to Nancy Petersen and let her, uh, share all her knowledge with all of you guys today. So welcome, Nancy!
Nancy Petersen [00:03:11] Thank you very much. I'm very happy to be here and always happy to have an opportunity to share what we're learning about the disease and the patient's journey.
Dr. Lotte [00:03:22] So Nancy is one of the most highly regarded names when it comes to endometriosis. How did you become so knowledgeable about this disease and also an advocate for endometriosis?
Nancy Petersen [00:03:38] Well, there's a story. Um, first of all, my first painful period was age ten, and I ruptured cysts for about ten years, uh, actually 17 years before I got a diagnosis. And at that time, it was to try birth control. If that didn't work, well, we'll just have to take everything out to cure it. And so the birth control didn't take, and so I took everything out to for the cure. And when that didn't work, uh, they suggested that I have a laminectomy fusion to deal with the back and leg pain and when that didn't work, they sent me to a psychiatrist. And so I spent 22 years dragging around a white hot, blisteringly painful left leg was getting slowly smaller, it was, there was muscle wasting going on, and I continued to work, but it was extremely difficult. I moved to Bend, Oregon in about 1974, and I moved through different jobs there and went to work as evening supervisor about 1980, and one evening when I was making rounds, I got a call from the operating room, said, "We need food. We've been on a case for hours. We didn't get to dinner. We're not going to get free." So supervisors did all kinds of things in those days. So I trucked to the kitchen, got a tray, sent it, I was having so much pain I grabbed a cup of coffee and I sat down in the cafeteria for a minute. And in the back of the cafeteria was this new young gynecologist who was talking to a group of patients who were interested in Endometriosis on some local research that he had done. I only got to hear part of the lecture before I got called away. About a year later, I bumped into him and I said, "So how is your research doing?" He said, "Oh! It just got accepted for publication. I'm really pumped!" And it had been accepted in three mainstream trained journals. And so I asked him I was co-chair of the hospital's research and development committee at that time. I asked him if he would present that, uh, research to that committee. And he said, "Well, what are you going to do with it?" I said, "I don't know, I think we need to know what you're doing." And so he did, and they were kind of impressed with it, too. And so then I took him to the administrative group and he presented there, and when he left the room, the administrator said, "What do you want me to do with that?" And I said, "I want you to give me some money. There are support groups all over the U.S. and Canada, and women are in trouble, and I think we can help them." And so reluctantly they did! They decided they would do that. And about the same time, I contacted a little magazine in Northern California and run by a physician who was always looking for things that was a little bit different but that work. And, um, it was called medical self care at the time only had a small circulation, about 60,000. But he was really interested. And so he sent a writer and a photographer up and the writer and I co-wrote an article called "Endometriosis Reconsidered". And the week it was published, um, we had a thousand phone calls!
Dr. Lotte [00:06:47] Oh, wow!
Nancy Petersen [00:06:48] So hospital switchboard in this little rural town is suddenly swamped! Everybody's like "What have you done?!" That was the start. And I spent ten years then on the road lecturing, interpreting his findings, which are very different from the old history, the old myth of the disease, to groups of patients and nurse practitioners around the U.S. and Canada. I spent about 25 weeks a year on the road for about ten years, and so suddenly what was happening the crowds were very large. I mean, people were so anxious for information in Canada they would travel two days to hear me lecture, and I was just so honored that they were willing to hear what I had to say about his research. And that kind of was the groundwork for how I got involved in this. But in Saskatoon, one night I gave a lecture on endometriosis, and after it was over, about a dozen people kind of hung around afterwards, and the rest of the crowd kind of filtered out. And I said, "Well, you know, if you'd like to talk, why don't you just sit down and tell me about your histories" and the whole time I'm listening to this, I'm going, "Jeez, it sounds like me." You know, I'm still dragging around the white leg, right? So I get home I'm supposed to have my gallbladder out next week, so I said to Dr. Redwine, "Say, would you mind stop by the OR. and taking a look?" He said, "No, it doesn't work like that. You have to come to the office for a consult." So he did, and he managed to get into the OR the next week, took him almost three hours to remove the rest of my endometriosis. I woke up in a recovery room, pain free. I no longer had a cramped calf or hot leg or a numb foot. And and frankly, it made me mad. Nobody should have to live like that. By then I was 49 years old. I have lived within through pain since I was ten. And that's how I got into it. Just nobody should have to live like that. Many of the cases I work with now are every bit as bad or much worse than mine, and no one should have to live like that. So many are still being gaslit. In Nancy's Nook we take in between 2,500 and 3,000 new patients a month will hit 200,000 oh, I think probably in another six weeks or so.
Dr. Lotte [00:09:18] Wow.
Nancy Petersen [00:09:18] The Endometriosis Research Center had to ask us to start a small discussion board about 2000 and 8 or 9, something like that on Yahoo, and it didn't work out very good there. So they suggested we open Facebook and they suggested we call it Nancy's Nook. And we took 200 patients to Facebook, in I think it was about 2010.
Dr. Lotte [00:09:42] Wow.
Nancy Petersen [00:09:42] 200,000 shortly.
Dr. Lotte [00:09:45] Wow.
Nancy Petersen [00:09:45] Does that answer your question?
Dr. Lotte [00:09:47] Yeah, that has grown a lot! And so for people who are listening, there are thinking, "Oh, endometriosis, isn't that in the uterus? Why did you have leg pain and back pain?"
Nancy Petersen [00:09:59] Well, there's a lot of problems with that. It's always been thought of as a disease of of uh you know, fertile women basically. But, um, really the youngest patients we've seen have been, uh, John Dulemba in Texas has, uh, documented case at eight years old, not yet menstruating. Many of our patients are post-menopausal. Redwine did a series of cases in their 70's. Um, and, uh, that we've seen a number in their 80's. So it's a disease across the spectrum of age of women and transgender. Um, and so, we've always thought of: uterus, tubes, and ovaries, but Redwine's work in the 80's showed us that those aren't the most common sites of occurrence. In fact, when you document it we send patients, when patients come to us, they've had a diagnostic laparoscopy and they're told that they have a pristine uterus, tubes, and ovaries, they don't have endometriosis, but they have classic symptoms. And so we ask them about their, their their their diagnostic laparoscopy and what they tell us is it was a single scope, it lasted 15 minutes everything looked fine. Well, we've had some wonderful experts around the world help us with that. Um, Professor Mohammad Mabrouk from Cambridge in London and Megan Wasson from Phoenix and Cindy Mosbrucker from Washington State, uh, who by the way is only physician that Redwine trained, and she was with him for about two years. Uh, but all of them have helped us to understand that, uh, the simple laparoscopy doesn't move the uterus, tubes and ovaries out of the way to expose the most common sites of occurrence. So there is a long history of believing it's a disease of a reproductive aged women, it's on the reproductive organs, and if they'll just have a baby or they aren't having enough sex or whatever, all this myth grew up around them. And so it's been hard to fight that. You know, it's we find it on the diaphragm, we find it on a small bowel, the large bowel, the pelvic floor, the ureters. We've a couple of years ago we did a survey in Nook and found in just a matter of an hour or so, 18 patients had lost their kidneys from obstructed ureters. So we really have to broaden our understanding of what the disease can do. And I and I think we're seeing a number of what I call, well, groups of excellence in care, uh, really developing all around the world. It's just not enough. You know, there's about 200 million patients worldwide, and and I don't know how many surgeons. Maybe 1,000, maybe 2,000 surgeons who can really handle that disease. So, um. I think that's that's part of the problem, is what we what we learned about it originally, uh, was not accurate.
Dr. Lotte [00:12:59] Yeah. And so you talked about how even young children can have endometriosis and, uh, even there was a case with an eight year old who wasn't even menstruating yet. So for people who are listening, what kind of symptoms would that would a young girl have and they're not even menstruating yet?
Nancy Petersen [00:13:18] What, uh, what we've heard from Dr. Dulemba and a few others who've seen really young kids is, is, uh, abdominal pain, irritable bowel. And very often the first they'll think about their appendix, they don't find anything to support that. The kids aren't eating well. They're they're constipated or they're having diarrhea. They're having lots of abdominal pain, sometimes some bloating. Although we probably don't see as much bloating prior to menstruating, but, um, they're in pain and they generally have a misdiagnosis of it, you know, something related to diet or or allergies or whatever. Yeah.
Dr. Lotte [00:13:57] Anxiety, right? They I think they go with stomach pain and a young child there must be anxiety about school, I've heard that one.
Nancy Petersen [00:14:05] Yeah. Oh that happens a lot. And of course, even in adults today, uh, when we had our program in Bend, uh, it was active from about 1985 to almost 2000, I think, um, 75% of our patients have been dismissed as neurotic. But we kind of had an edge on that because everybody who came to band got had a surgery. And so we had positive biopsies on all of those patients. Nobody had negative surgeries. And so I I've always been a little concerned about that anxiety type diagnosis. And we're seeing, you know, even today a lot of mental health diagnosis and dismissal because of mental health and the other thing around central sensitization, to me, they're they're using those tools in patients who actually have endometrioisis.
Dr. Lotte [00:14:57] Mhm.
Nancy Petersen [00:14:57] Two groups have sort of raised questions about that, but it hasn't been well looked at. Uh, Dame Shirley Parrish, who is a psychologist from the United Kingdom about 30 years ago wrote a chapter in a book called Psychology and Gynecological Problems. She wrote the chapter on chronic pelvic pain. And what she found was that patients with chronic pelvic pain had abnormal MMPI's or or personality index testing. So they had things like psychosis, neurosis, schizophrenia, you know, anxiety, all of that. She was the only person who went back and looked at those patients when they were pain free. All of that went away. So I think it's a coping mechanism. And I think the same thing is happening with central sensitization. A group in China, about 2017, I think, looked at their patients after they got their endometriosis excised and their pelvic pain was gone the central sensitization began to clear up.
Dr. Lotte [00:15:57] Yeah. So what happened to the central sensitization after the surgery?
Nancy Petersen [00:16:02] Yeah, yeah. Starts to go away.
Dr. Lotte [00:16:04] Yeah. And so central sensitization uh, for people who are not familiar with that, uh, can you just briefly touch upon that?
Nancy Petersen [00:16:12] Well, I'm not well versed in it because I, I abhor it so much because I know that patients get better, but it's the concept that the brain picks up on the the presence of pain in the body, and that it's hard for the brain to let go of, of the fact you've been in pain in the past. But most of our patients who have that diagnosis still have active endometriosis. So I'm always a little cautious about having them accept that diagnosis.
Dr. Lotte [00:16:42] Mhm. Yeah. So even when they have surgery uh what if there is lesions left behind? Uh let's say somebody had a hysterectomy, a complete hysterectomy! So they took the ovaries, they took the uterus, there is nothing left, and now they still have some lesions left behind. Uh, what happens with the hormone production there?
Nancy Petersen [00:17:04] Well, when you take, there's been a common misconception if you just castrate a woman, uh, her her disease will go away. Uh, Cedar Bullen um, I think maybe about 20 years ago, researcher in the Chicago area, uh, noted that the endometriosis lesions themselves produce estrogen. Others have said they may produce other hormones as well. So you can take all estrogen supplies out of the patient's body, and the patient will still have pain. I was 22 years post hysterectomy on no estrogen replacement and had agonizing pain. And many of our patients experience that. So we have that misconception, if you just take the ovaries or you shut down their ovaries with medication, anything, put them into either natural, surgical, or medical hormone or, uh, menopause, their disease will go away or quiet down. And that's not what patients are experiencing.
Dr. Lotte [00:18:02] So what happens with, um, patients that have endometriosis and they go to the doctor and they say, "Well, we're just going to give you some, you know, birth control pill." And, uh, you know, the things that you hear, is uh, "You shouldn't have surgery yet. Just wait and have surgery until you want to have kids." And meanwhile, the patient is dying in pain. They can't function. They can't go to work. Uh, they're in extreme pain. And then they're given birth control pills, and then they react to the birth control pill. Um, what do you what do you think about that method of treatment?
Nancy Petersen [00:18:37] I think there's, um, perhaps some acceptable level of trying a patient on birth control pills if they come in with painful periods, they may have just painful periods, and you may be able to help them. But in fact, you can't treat endometriosis with that, even if you reduce their pain, you don't stop progression of the disease. And that concept of let's just wait till you're ready to have kids, allows the disease to progress. And so pretty soon you've got adhesions, you know, you develop adhesions from surgery yes, but you develop adhesions from inflammation. Endometriosis causes a lot of inflammation. And so these patients are now thinking, well, gee, I've got to wait till I'm ready to have a family, I've got to put up with all this pain. Uh, but in fact, their disease can progress. I don't want to give the misconception that all disease progresses because I don't believe it does, but a lot of it does. And I always say to people, um, you know, when a doctor say, "Well, why are you telling patients to get their disease out early?" And I said, "Well, you know, DIE or deeply invasive, invasive endometriosis didn't happen overnight. I mean, it's been a while. And why let it get that bad?" Uh, I have you know, I've noticed, uh, pressure in recent years of "We don't have to operate on everybody." I mean, you know we can find ways to control their pain. We don't eradicate the disease with medication. We don't stop progression. We don't completely control their pain. Uh, you know, to me, it's it's misogynist rationing. We really don't want to spend the money to take care of these patients worldwide. And it's it's growing, it's becoming increasingly frustrating for me because I've even seen some good surgeons say, "Oh I didn't take everything out, you can clean up the rest with diet and exercise." There's no evidence to support that at all. So where's that coming from? Is that restlessness? "I don't have enough time to do that." I mean, I know that the work we've done, not just my advocacy group, but the advocacy groups around the world, have put a lot of pressure on physicians because patients want freedom from pain. And so I know we're pushing them hard. But there are programs beginning to respond to train more surgeons, at least, to handle the less complex surgical disease. But the concept of leaving disease until it's so bad you can't manage it or until you're ready to have a baby, I think is is is not the right direction.
Dr. Lotte [00:21:14] Mhm.
Dr. Lotte [00:21:16] Uh, now you mentioned the inflammation that happens. There's a lot of inflammation when the endometriosis is left behind or not treated correctly or excised out of the body. So when somebody has all that inflammation going on what happens to all the comorbidities that go along, you know, are these patients now more likely to develop other diseases such as lupus or multiple sclerosis or rheumatoid arthritis or other inflammatory, uh, conditions?
Nancy Petersen [00:21:47] It's extremely good questions. Um, the the problem is we don't put money into research for this, to answer those questions. If you look at it antidotally, we see that a lot of our patients, excuse me, are patients coming in to Nook looking for information, have multiple inflammatory conditions. Uh, and they always ask those questions and we don't have any good answers. I think the, the new move going on, perhaps with the Biden Administration's Women's Health Initiative, and certainly with Shannon Cohn's film Below the Belt, Uh, now, looking at distributing that worldwide has really raised a lot of questions about why aren't we asking the important questions about this disease? Um, and, you know, it's a long haul, I remember when Dr. Redwines's work was first published in the 19 late 1980s's, there was a former professor from Stanford, had moved to Central Oregon, and he was reviewing the work and he said, "You know, this is really good stuff." and he said "But you have to understand it's going to take 30 years for this to be accepted." What I didn't understand was it was going to take 30 more for it to transform the industry, and that's kind of where we are right now. We're seeing training groups all around the world, uh, every year I get notices, dozens of notices of high quality in endometriosis surgery education, uh, opportunities for physicians. And I think that is critical, but it's not enough and it's going to take time. Another thing that I think has been extremely helpful is the work that, uh, Dr. Sallie Sarrel and uh, and uh, Andrea Vidali have done in terms of the Endometriosis Summit every year. They bring together practitioners, researchers, patients, and it's kind of a free for all. I mean, patients get to hear the best of the best, um, and they go home expecting that, which doesn't make their local doctors happy all the time. And and I don't want you to go away thinking that I'm the best in the world, because I have some detractors and I have some very aggressive detractors. And, uh, you know, I'm sorry about that because I think it it makes other patients maybe a little concerned about, "Well, maybe Nancy's Nook isn't the thing for me", or "Maybe there's nothing there for me to learn", because, but every day we get feedback from patients about their lives being restored, so we know we're on the right track. But, um, I'm not 100% loved.
Dr. Lotte [00:24:28] So The Endometriosis Summit. So that comes up, uh, I believe March 8th through 10th in 2024.
Nancy Petersen [00:24:36] Yes.
Dr. Lotte [00:24:36] So, um, we'll put a link to that in their podcast notes as well. And that is an excellent resource, um, to participate in that. You can participate in-person or you can participate virtually, so anybody out there that is struggling with endometriosis and you can't travel because you can't plan when you have endometriosis, because you might end up being really, really sick and you're just going to lie in the hotel room. Right? So it's very difficult for these people, so the fact that it's offered virtually is, is great because there really reaches a lot of people that way. But the, the kids. So when you go to the doctor and the doctor says. Taking my own daughter because I have endometriosis myself, undiagnosed endometriosis, self-diagnosed now that I'm a doctor. But, um. So my daughter had really bad endometriosis, and I remember taking her to the ObGyn when she was a teenager. Okay, this is not resolving, uh, we've been, you know, trying to the pain medication and now we're trying to birth control, and then we try another birth control, and then we try another birth control. And she would always have side effects to all the different birth controls. So is it common that people that have endometriosis tend to not do well with with birth control?
Nancy Petersen [00:25:55] Yeah they don't do well. Not really not, not much of it completely relieves pain. Every new drug that comes out, you know, sort of lots of hype around it. This is great for, you know, they used to say for treatment, now they've backed off of that and the new drugs that come out are really identifying we're treating pain, not endometriosis. Uh, but most of them don't give complete relief, and so it impacts sexuality, impacts your ability to participate in their family, it impacts their ability to bond with their kids. I did a survey in Nook, uh, and I just left it open for mothers and kids to talk about the impact of endometriosis, um, being on, on in the family. And very quickly, in just a matter of couple hours, we had 300 responses of people saying, "I can't bond my kids, I can't get off the couch." One and I've had three different patients now tell me about the impact, you know of having, uh, you know, they often get told to have a baby if they can get pregnant, that's going to help. That doesn't help any more than birth control. But I've had three different patients now tell me that they've gone to their doctor's office and said, "Look, the birth control isn't helping me. I'm in agony. I'm exhausted. I've got two toddlers at home. I can't manage this. I'm not able to bond with the kids, I can't participate, I can't even play with them." And they've had doctors say to them, "You know, you weren't pregnant long enough. Have another baby." And we're going, oh my God, you know this. This just can't be. This just can't be. Uh, the treatments help pain, they don't really treat pain. I think probably the GnRH family of drugs are somewhat more concerned because most of our patients who've tried those have permanent side effects, and there they're significant side effects. It's not just bone loss, it's bone pain. It's joint pain. These people are not doing well. And, uh, I think the FDA had about 25,000, uh, uh, side effect complaints filed with them, including 150 or so deaths. Uh, but you never hear anything about that in the literature. When that was discovered, uh, Dr. Redwine was asked to do an assessment of the data that was used to move Lupron from prosthetic cancer to endometriosis. Um, when that assessment was done, it showed serious problems with the drug, but the drug company got a court order to shut that down. So doctors and patients never had a chance to have an informed consent, uh, consent about the use of that drug. And so, um, it's unfortunate, but I never recommend that family of drugs for patients because of the risk of long term side effects.
Dr. Lotte [00:28:43] Yeah. So going back to the the child that's eight years old and might have stomach aches. And another clue, um, could it be to ask if the mother had menstrual pain?
Nancy Petersen [00:28:59] It shows up in families for sure, and sometimes multi-generation, sometimes skips a generation, sometimes you're the only person in the family with it. You just never know. Uh, but I think there's a strong genetic component belief around it. Again, it's an area that doesn't have enough research. A lot of the research that's done, is done on going back and looking at records of previous patients. We aren't currently looking at histories. And, and, uh, we need to do some of that kind of thing to, to get a better handle on on what's going on.
Dr. Lotte [00:29:35] And so now, I know there are different theories, right? so we have the old Samson's Theory of Retrograde Menstruation. Um, but it doesn't really hold true because when you look at the statistics, uh, you know, 90% of women have retrograde menstruation, but only 10% have endometriosis, so it doesn't make any sense at all. And then we have Dr. David Redwine's Uh, theory of the Mullerian, so meaning that when you are a fetus in mama's womb and all that tissue gets layed down there is there is a defect that's created. So and I know that they have can see on ultrasound and they have done studies where they've looked at the fetuses and they, they can confirm that the endometriosis is already there. But meanwhile when you go when you take your daughter to the gyn, when she's a teenager, they consistently told me that, uh "Oh, no, she's too young." And, you know, "We usually can't tell if they have endometriosis until or at least in their 30's." And "We're going to try all these different things." But literally it was there from the beginning. Right? So she came into the world with that endometriosis. Um, so what is the, what is your understanding of that?
Nancy Petersen [00:30:47] Well, you know, Sampson's theory of the reflux menstruation, uh, you know, there are some really big holes in that. In the first case when you transfer a tissue from one place to another, there's initial attachment and then deeply ingraining and and and and becoming implemented in the tissue, that's missing in endometriosis, it isn't there. Um, and so that's kind of the first thing. The second thing is Redwine in his research in the 80's uh, made arrangements with the medical examiner's office who was doing autopsies on babies for other reasons, completely unrelated to the endometriosis. He asked for samples from the floor of the pelvis, which is the most common site of occurrence, and 9% had endometriosis. There is a larger group in Italy who had been looking at abortions or aborted fetus, or spontaneous miscarriages, and looking at that same area, and confirmed the presence of endometriosis in infants. So I think we have to be really careful about saying, uh, you know, it's reflux menstruation because there's no initial attachment, there's no, uh, you know, deeply moving into the disease. Um, it's very likely, I think Redwine's concept and, and I see many people supporting that now around the world of Mulleriosis or the concept of it being laid down in fetal development. Um, but reflux menstruation has been around forever, and it is still caught and taught in some medical schools, and so the idea of everybody's going to have to put up with bad periods if you have reflux menstruation just doesn't hold water but it's commonly, uh, it's kind of like the same thing of telling patients "You just have a baby, it'll go away" or, you know, all of that, or "If we take out your ovaries, it'll all dry up and go away." Those kinds of things are just so deeply ingrained in the history that it's it's slow to shift.
Dr. Lotte [00:32:51] Mhm.
Dr. Lotte [00:32:52] Um, another thing that, uh, made me think about how the. All of a sudden the symptoms get better for a year and then we were told that, "Oh, then it's not endometriosis. It must be something else. It's probably, you know, an ovarian cyst." or something like that. And then she ruptured a cyst and we went to the ER and of course they said "It's a ruptured cyst." Right? And so it's this constant misdiagnosis and it just goes on and on. And I'm thinking of, I mean, how do you as a normal person navigate the, you know, the medical treatments for endometriosis? I'm a physician and it was still hard for me to navigate. Here you are at the ER, you know, and they're like, "Okay, we got to give her morphine" and you know, "It's everything looks good. We did an ultrasound. There is nothing wrong." And then they send you on your way with no pain medication nothing!
Nancy Petersen [00:33:45] And no support.
Dr. Lotte [00:33:47] Right? And four hours later we're back in the same boat that we were earlier. Right?
Nancy Petersen [00:33:51] I've got 200,000 patients in that same boat.
Dr. Lotte [00:33:55] Mhm.
Nancy Petersen [00:33:55] And I you know, I don't know the answer except education. We continue to educate patients about you know first of all those people coming out of their gynecology residencies are not well prepared to take care of endometriosis. Some of the surveys that uh, Shannon Cohn's group did when they're doing their film that, you know, 80% of the physicians didn't know the symptoms a lot, uh, very high percentage, I don't remember the exact, was it they were kind of intimidated by the disease. And all of that, I think, is a byproduct of the myth that's come up around the disease over the last 100 years. And if you don't know what it looks like and you don't know how that changes over time and you don't know where it's found, and you don't know the true symptom profile, and you take a patient to surgery, you just set yourself up to fail.
Dr. Lotte [00:34:46] Mhm.
Nancy Petersen [00:34:46] There are basic things you have to know about the disease to be successful, and I don't think that's fully grasped yet.
Dr. Lotte [00:34:53] Yeah.
Nancy Petersen [00:34:53] Um but it's hard because you know one of the things that's happening a lot right now is the big push for ultrasound and, and, and laboratory tests to diagnose endometriosis. They're not 100%. But the whole industry out there I heard about ultrasounds are great! And so if you're ultrasounds negative you can't have disease. And what's happening and patients are being dismissed from care just as your daughter experienced, prematurely, because the ultrasound was negative or it was probably a cyst, or it's all gone. You know, we have to be honest with patients. We need informed consent. Yes, ultrasounds are good, but ultrasounds, miss disease even invasive disease in some cases. So you have to be able to say, "Look, you know, I recognize you've got classic symptoms, endometriosis here, but I can't find it. So there's a couple of options. We can try you on birth control and see if you get better, if you don't, we can send you to somebody else who has a little more experience with endometriosis." That doesn't happen very often, but I do hear it happening more often. Um, I think as the word has gotten out, uh, physicians are beginning to say, "Well, maybe I don't know enough about this disease." Um, and maybe, you know, "I'm familiar with so-and-so, who's seeing a lot of endo patients, maybe he can help us out." And so there's more of that kind of collegial referral saying, and "I've got a kid here that's really in trouble." I have a good friend in, in London who has a daughter who at age 12, became disabled. She's living on the couch and this kid wants to be a physician, and she's a brilliant student, and she's very committed to her studies. She spent two years living on the couch. Finally got a surgery. They did a little ablation. It didn't help at all. Oh, well, I also, I think tried some suppressive medication and reffered her to mental health counseling. So for two more years, she's in agony when she finally gets a decent surgery, she has a nearly obstructed outlet to her bowel.
Dr. Lotte [00:36:56] Mhm.
Nancy Petersen [00:36:56] If you've been living with stage 3 or 4 disease now since she was 12 years old, she's now 16. She finally gets relief. You know, we've got to be more sensitive to what people are trying to live with. These are peritoneal signs and symptoms. There's not a medical student or nursing student on the planet that didn't learn the symptoms and the importance of them, unless it seems to be related to their mens or their menstrual cycle.
Dr. Lotte [00:37:23] Mhm.
Nancy Petersen [00:37:24] Then it's "Oh it's just a period."
Dr. Lotte [00:37:26] Yup.
Nancy Petersen [00:37:26] Uh, and, and we need to move away from that because we're seeing patients losing kidneys and we're seeing patients with ruptured bowels, we're seeing patients with stage 3 and 4 disease having a pregnancy and getting into serious complications, either the patient or the pregnancy or both. You know, we need to do a better job at understanding the impact in the disease on people's lives.
Dr. Lotte [00:37:50] Yeah, absolutely. Um, and like I said before, it's so difficult to, uh, maneuver because you go to your ObGyn and then they're told, you know, "Everything looks great. We did the ultrasound. We did, uh, we did a lap and we couldn't see anything. Your uterus looks fine." Right? And they miss it. Because they don't know what it looks like. Endometriosis is all these different colors. And it might not even be on the uterus. It might just be somewhere else in the abdomen. Right?
Nancy Petersen [00:38:15] Rarely not on the uterus, but most of the time that's what they're looking at.
Dr. Lotte [00:38:19] Yeah.
Nancy Petersen [00:38:19] That's you know, to me, you know, for 35 years I've been complaining about things. I'm starting to reframe that around there are there are opportunities in understanding that we didn't know what it looked like or we didn't know what the symptoms were. The opportunities for improving people's lives are just a matter of learning some simple things about the disease, like what does it look like? How does it change over time, and where is it found? And you know, I don't, you know, it just it is so, um, mind blowing to me to have patients living in this kind of pain. It's just not right. And yet there's very little understanding of it. There's not enough understanding of it. Like I said, there are pockets of excellence cropping up everywhere now, but there's not enough of them.
Dr. Lotte [00:39:14] Yeah. And you're you're told. So I'm going to tell the story of my own daughter. So now she's 28, but, uh, well, now she's 31, but she was 28 when she had surgery. Um, but going through medical school, and we're taught being a Naturopath, we're taught, you know, change the diet, you do all these different supplements. And I said, "We're already been doing that for 15 years, and it's not working.".
Nancy Petersen [00:39:36] Yeah.
Dr. Lotte [00:39:36] Right? I graduate, she sees several of the doctors, uh, you know, in my, in my school, then I graduate, I ask my colleagues "Who are who are the people that knows what's going on, who can I refer my daughter to? Who are the top OBGYNs here in Arizona?" We go see two of them and it's basically the same. One of those doctors was actually able to say, I think she has endometriosis because it's she it's painful during the physical exam. The other the other obgyn, "Everything is normal." She couldn't even, right? So at least the second doctor could, with palpation, say I suspect that's what it is. So here we are. So again. But you know, they said, "Oh, just wait, don't do the surgery yet. Wait until you want to get pregnant and then do the surgery." Well, everything got worse and worse and worse. So then I talked to my sister-in-law, I'm in Arizona, she's in Connecticut, and she says, "Wait, um, you know, I have a friend whose daughter had surgery by Dr. Iris Orbach in Los Angeles or in California, and she was talking about this Facebook group, and I start laughing. I said, "Come on, I just went to medical school. You're telling me to join a Facebook group to learn about endometriosis?" And she said, "Yes, yes. Let me find out what it's called." So a day goes by and she says, "Okay, it's called Nancy's Nook. All the information is there." And literally we plowed through Nancy for like three or four days, like it was I mean, it was nonstop! Whenever there was a break, more Nancy's Nook! And it literally changed and probably saved my daughter's life. So thank you for all that work because it is amazing. I mean, all I do nowadays is just you have to go to Nancy's Nook that's where all the information is that's going to change your life. And I mean, it's fascinating to think that a Facebook group knows more than the physician or your teachers in medical school, but it's just we haven't gotten that far yet, and they're still teaching the old stuff. You do the diet, you do the supplements, if that doesn't work, you do the birth control pill, do the ultrasound, if that's negative, that's probably not it. Right? It's probably the cyst. And that's what we've been told for all those years.
Nancy Petersen [00:41:55] And it still goes on, it's still very common. Um, and, you know, you kind of touch on a, on an important piece about once a patient's been seen by a gynecologist who has a good reputation says there's nothing wrong with you, it's really hard to get another referral, or to get another gynecologist to take you serious. Now, you mentioned the one gynecologist could tell on a pelvic exam. That's all Redwine used was history and pelvic exams. Um, and he, you know, whether or not the organs are mobile, whether or not they move, whether or not theres any nodularity, if the exam is painful, he said he always watched the patient face when he was doing a pelvic exam. Those were the things that he used in primary, because in those days, in the early days of his work, there wasn't a lot of good scanning available. Um, and so there are ways to do a better job of diagnosing, but we aren't teaching.
Dr. Lotte [00:42:49] Mhm.
Nancy Petersen [00:42:50] You know, we aren't teaching.
Dr. Lotte [00:42:50] Yup.
Nancy Petersen [00:42:50] And we aren't teaching. You know, uh, that the nodularity on the uterosacral ligaments or nodularity on rectovaginal space or nodularity on the bowel means it's endometriosis if it's painful, the patient generally try to get off the table with the speculum still in place. We keep ratcheting open those speculums like we're changing a tire is one of the things that drives me nuts! Use a smaller speculum and open it carefully! You know? The minute the speculum blades hit, uh, a painful nodule patients just going to go right through the roof. And so many patients talk about being shamed for crying during a pelvic exam. That's just unacceptable. Because, uh, back to the peritoneal signs and symptoms, most intense pain that a person can can have is inflamed is intra abdominal area. Same thing happens when you touch a nodule, uh, during a pelvic exam. There going to be an agonizing pain, but we just don't have that firmly ingrained in our approach. Yeah.
Dr. Lotte [00:43:52] Yeah. And I know that, uh, in Nancy's Nook, you have a list of excision surgeons. So they are there are special surgeons that do a lot of cases of of endometriosis excision, meaning that they cut it out, instead of just burning the tissue, which is ablation. And can you talk a little bit about the importance of having a surgeon that is an excision surgeon and an experienced surgeon who has done, you know, does this all the time versus a regular obgyn that's going to do ablation?
Nancy Petersen [00:44:27] Sure. Um, people like the doctor you recommended, Dr. Orbach um, uh, Cara King Robinson at Cleveland Clinic, and I, uh, she did a podcast with me a couple of years ago, and we were talking about the importance of physicians who work together. Uh, you know, a gynecologist, probably even a good endometriosis surgeon is not going to be able to handle all the disease on the diaphragm, on the small bowel, on the large bowel, on the ureters, sometimes retroperitoneal near the kidney. So having a team of people that you regularly work with is critical. We don't vet surgeons. We don't have the ability to say this person's a good surgeon or not. We get recommendations from patients, and when we get 2 or 3 recommendations from patient about a surgeon, I ask them to give me an email address so I can talk to them. Um, and I will usually tell them they've been recommended to us and why. And I try to prepare them because these are not general endometriosis patients that they're going to get out of Nancy's Nook, they're going to get people have been turned away dozens of times. Some have seen 15 different surgeons, and they're still in agony and they've tried everything, they've lost organs, they've been on every med that's out there. So they're complex cases and I want surgeons who are going to help us to understand that this is a difficult group. They're exhausted, they're emotionally fragile, they're angry and they're in pain. And so I like to try to give physicians a chance to look at what our needs are and do we have common ground with your skills and our needs. So that's kind of how we get physicians is that they're recommended. Now, some physicians will recommend physicians that they've operated with and they know their skill level, but we generally don't take this position. Somebody will say, "Well, I know a doctor at so-and-so who I think he's doing some excision." We try to stay away from that because all of our patients have already had multiple treatment failures. So we want people who the physician themselves are confident with their ability to excise endometriosis. Some of the industry is taking exception to the concept of endometriosis specialists or endometriosis excision specialist, um, because they don't think it's an actual category of doctor. But for us it's a category of doctor that works. These are people who can restore the quality of patients lives. So we look for doctors who work with teams who are confident with their ability to to handle complex disease, who are willing to look at other pelvic pain generators. One of our concepts is excision is step one. There are so many, um, pain generators in the pelvis, um, that we need to know that if if that's not something you're comfortable taking care of beyond excision, then do you have somebody in place you can refer them to for pelvic pain management or for investigation for hernias for instance or for fibroids or for, you know, pelvic floor disorder. Pelvic floor physical therapy really has come into its own in the last ten years and and are making great strides in helping patients with other causes of pelvic pain. So yeah, it's very important to have people who have skills who are confident with their ability, who have other consultants they can bring in, in the event that they run into disease they don't manage. Now, the first the first time I saw a gynecologist take an endometriosis lesion off the pericardium, the lining of the heart, I held my breath. I said "Was there was it a cardiac surgery team standing by?" She said, "Well, there was one pretty close!" but, but it now is more common in the really advanced skilled surgeons for them to do that. I talked with a fellow, uh, Ricardo Pereira in Brazil about this concept because, uh, doctor Lee, Ted Lee from uh, UPMC and, um, you know, in Pennsylvania now he's at NYU in New York. Uh, but he said, uh, you know, I think that Doctor Pereira had done some of those, so I got ahold of him! I knew him anyway, but I got ahold of him, he said, yeah, he done about 100 of them now. And these patients are developing chest pain with exercise, tachycardia and then when somebody takes an x-ray, they got a little fluid building up around the heart between the lining of the heart and the heart. And these lesions pretty much are superficial on the lining and can be picked off, um, by a skilled team so we just see there are kind of the skills expanding, expanding and, and, uh, physicians working together. And, you know, I think Dr. King, uh, Cara King from Cleveland Clinic was telling me that their really complex cases they actually will have a patient care consult before the surgery to talk about all the imaging and all the symptoms and all the tests that they've gathered together. This is going to be a big surgery. It's going to take 5 or 6 hours. Here are the team members that are going to be involved in it. And everybody kind of reviews the information before they start. I think that's an excellent, uh, approach in complex disease.
Dr. Lotte [00:49:49] Mhm. Now, so endometriosis is a whole body disease. It, it isn't just something that it happens with menstruation. Um, so what is the impact for people that have endometriosis, uh, in terms of career? Um, uh, their work, their, their relationships, uh, just general life?
Nancy Petersen [00:50:11] That that's a really major area that is terribly underappreciated. Um, many of these people spend their lives on the couch with a heating pad, their families, and it particularly rises to the surface over the holidays, uh, when families are expecting them to be there for the big family celebrations or to host one of the big family celebrations and they can't get off the couch. Uh, and the families can be very unsupportive in that situation. I hear we, uh, Donna Lux is one of my, uh, administrators on Nook and I every year we start around the holidays, we start reminding people that it's okay to set boundaries. It's okay to say no. You can go late and leave early. You know, you can take a dish, not do the whole dinner, things like that. We try to to encourage people to set boundaries around that, but it impacts their schooling, it impacts our social lives and particularly with young people I'm really concerned about the amount of time they isolate themselve, they're in so much pain. They don't develop their social skills they're, you know, they're not hanging out with their budies, they're not able to. Um. Marriages fail regularly. Relationships fail regularly. Um, partners just finally give up because you're sick all the time. We can't do anything. We can't plan anything. There's no intimacy anymore. That sort of thing. These are all things that really, um, are impactful. Uh, one of the things that disturbed me earlier this year was really a very famous surgeon said, "Well women aren't having babies because they just want to have sex." They don't have sex because it's not only excruciatingly painful when they have sex, but for many of them, it lasts for a week! I mean, they get all this pelvic floor spasm, and they get, um, rectal spasm, they get, you know, just horrible pain, it doesn't go away after one evening of intimacy. And so we don't appreciate them. Um, parents are not always, um, uh, although I have to say, I've collected a real, um, category of tiger moms who are just not putting up with this stuff when they're being told their kids are going to have to put up with it. No, we don't we don't have to do that. We use a cartoon done by Lily Williams, and it was published in the Washington Post. Um, they have a newsletter, or a health letter I think. Lily Did that about three years ago, and we use it all the time. She takes it's a beautiful cartoon done taking her, uh, anybody through her course over from age 12 to about age 22 before she got relief. And, you know, all the doctors she saw, all the different advice she was given and none of it worked, you know, and we use that all the time to kind of help families understand this, this isn't somebody that's just lazy, this is somebody feeling a real serious pain and cannot live their life. Um, probably the most gratifying thing that I get and have gotten over the 30 year I've done this has been thank yous for saving lives. I mean, literally saving lives. People who were at their very wit's end. One of the first patients that came to Bend, and she tells this story publicly herself. I won't use her name, but she was a musician from, um, Virginia, and she got a copy of that magazine, Medical Self Care, we wrote the article that precipitated all the phone calls. She was probably one of the first people on a plane coming to Bend, Oregon. Um, but one of her customers brought in the magazine and dropped in front of her and said, "I don't I don't talk with women about this very much, but I know you aren't feeling very good. You might want to look at this magazine." And boy, she was on the phone the next morning! Um, it literally saved her life. She was to the point where she could not concentrate, her career was at risk, she was just an agonizing pain. And look, right now, I probably have a dozen patients that I've known for 30 years who do not have pain, who are there to just follow the discussions because they to believe nobody should live like that. The impact on large is and and and and, on potential, you know, for careers or even motherhood or even family-hood, even, you know, a marriage or a partnership, it it's very, very huge. It's very negative. It's very difficult for them to maintain those relationships. Because the people around them don't really understand.
Dr. Lotte [00:54:47] Mhmm.
Nancy Petersen [00:54:47] You know, if you don't have that kind of pain, you don't get it. Why are you always on the couch? You know, so we just have so much to learn and so much support that we could bring into making it easier for them while they try to find care.
Dr. Lotte [00:55:04] Mhmm.
Nancy Petersen [00:55:05] In our whole goal in Nook is to educate them with the basics of endometriosis so they recognize red flags. They can say, "Wow, wait a minute, I've been there, done that." Like you folks going, you know, the diet, the anti-inflammatory, all this stuff. No, no, we've been doing that for 15 years it hasn't worked!, you know? We try to teach patients the basics so that they can use those tools when they're sitting across from a physician who says, "Well, we just take those ovaries out and you're going to be fine." It's time to say, "That's not what I want to do." and perhaps to look for another opinion.
Dr. Lotte [00:55:39] I think that's really important. And I know that nook teaches, uh, people to be their own advocate. And I know that my own daughter wrote, I don't know, 28 or 30 questions, for this second ObGyn we saw! His jaw was on the floor, he's like and I said, "I promise you, I'm not the one who wrote these questions. She wrote these questions." Uh, and so, I mean, they were so specific, it sounded like she had a medical degree because she had learned so much in, in Nancy's Nook that, uh, it really floored the, the ObGyn about the the amount of knowledge that she had going into that, um, that checkup.
Nancy Petersen [00:56:22] I think that that's one of the things that started to happen, uh, and why we're seeing physicians refer patients to us for education, because for them, it's helpful that patients have that information, that they don't have to spend so much time trying to explain. Um, and like I say, it's not uncommon for us to get patients every week referred by their physician. Um, interestingly enough, we're having more and more medical students, residents, and a number of GYNs join Nook to observe the discussions, not to provide care. I don't know what their skill level was, they're coming because they want the information. And they'll say that in their initial things. "I'd like to see what patients are saying about endometriosis.
Dr. Lotte [00:57:07] Mhm.
Nancy Petersen [00:57:07] So that to me is encouraging. You know it's a step in the right direction.
Dr. Lotte [00:57:11] Yeah. Absolutely. Um okay so my last question is what changes and improvements would you like to see in the care of endometriosis in the in the next coming years? What's your wishlist?
Nancy Petersen [00:57:24] I think the most important thing we can do for patients, number one is to listen to them and to believe them. And if we don't have the skill ourselves to take care of them, that we refer them to somebody. I would like to see more of the MIGs programs, Minimally Invasive Gynecological Surgery fellowships teach those basic core things. I mean, they teach how to do minimally invasive surgery. But if you don't teach, um, you know, finite, finite understanding of the symptoms of endometriosis, what endometriosis looks like, how it evolved over time, where it's found, the statistical distribution of it, and what it takes to remove it all, taking patients to surgery isn't going to work. So you'll always have people saying surgery doesn't work until you learn those basics and use those. When all of those are well applied, we will have far more successful surgery, then unsuccessful surgery. That's my belief. I read every history and physical that came to Bend um, some 3000 patients. Um, I read every history and physical that they brought with them and every history and physical and operative report that was done while they were in Bend, the whole time I was there. And you could just see the difference in the understanding and then in the progress of the patient, how well they did, um, you know, having had multiple surgeries prior to coming and the minute you get them in surgery, you look at their previous, um, films and you can see diseases there, you remove that disease and things their lives get better. Um, there are there is a small degree of recurrence. I mean, you can't deny that some people don't have all their disease developed at the time they go to surgery. But if they're in agony, you should get that disease out so they feel better.
Dr. Lotte [00:59:14] Well. It's been a pure pleasure and joy to have you as a guest today, Nancy, and just sharing all your information. So we're also going to put the link to Nancy's Nook in the podcast notes. So of all you listeners out there that are either struggling with, um, unresolved pain or weird symptoms like even leg pain, right, like Nancy had. Go check out Nancy's Nook or like my sister-in-law who gave me the information, give, you know, give out that information because there's so many people that struggle with painful periods just in general. Um, so, you know, give that information out so that they can get the care that they need. So again, thank you so much, Nancy, for taking the time and being a guest today.
Nancy Petersen [01:00:01] Well, thank you for having me. I always enjoy trying to spread more information. I appreciate that much.
Dr. Lotte [01:00:10] As we conclude this episode, I want to express my heartfelt gratitude for your presence within our community. If you haven't yet, make sure to subscribe, leave a review, and share this podcast with friends and family. Subscribe to my newsletter in the show notes and receive new podcast episodes delivered right to your inbox. If you resonate with the interconnectedness of mind, body and soul and are motivated to embark on a journey of personal healing, I invite you to connect with me at DrLotte.com. Together, we can pave a path towards transformative healing in your own life.