Ep. 18: Opening up about endometriosis | Empowered Health - Empowered Health | A Podcast with Emily Kumler
Endometriosis is a disorder where the endometrial tissue– tissue similar to that of the uterus lining– appears in other parts of your body, usually in the pelvic region, but could spread as high as your lungs. An estimated one in ten American women have endo, however, many women remain undiagnosed. On average, it takes a decade to finally get a diagnosis. That’s a long time to deal with chronic pain, being dismissed, and the stress of it all. There is currently no cause or cure, leaving many in the dark about what’s going on with their bodies. We talk with some of the women who have endured endometriosis along with experts Dr. Stacey Missmer, the scientific director of the Boston Center of Endometriosis, and Dr. Ken Sinervo of the Center for Endometriosis Care.
Emily: I’m Emily Kumler and this is Empowered Health.
Alea: I was just not feeling well my whole life. I remember even in fourth grade, very clear memories of going to the doctor or going to the hospital with my mom at night and not being able to study my multiplication tables and being totally embarrassed the next day in class because you know, our teacher would line us up and have us one by one go down the line, you know, and have to do your multiplication tables. I said, I was at the doctor all night with terrible stomach pains and he said, oh, too bad you should have studied anyway. So like those memories are so clear in my head and I know that was before I started my period. So whether that was the celiac or endo or I know there’s theories out there about whether endometriosis has a presence in us from birth. I never assumed it was part of period problem, you know, because it was every single day just pain. The lower back pain, chronic nausea. I carry one of those little like tea tree smelly sticks with me. Always have ginger on me, chronic constipation, I had pain during sex. I had horrible cramping where I remember in high school crawling to the nurse’s office to have my mom come pick me up from school because I couldn’t carry out the school day. If I got my period while I was at school, I was in bed for one to two days. I just couldn’t move. I had one gastroenterologist when I was a teenager actually tell me, this is a mental thing, this is an emotional thing. Young girls, you guys worry too much. Don’t worry about the test grades. Don’t worry if the boys like you. I think you should try to see a therapist because I think this is an anxiety problem. My father had also just passed away and I happened to be queer, so I did not care whether the boys liked me or not. You know, and I told the doctor like, I really don’t care about any of this. I know that my life seems crazy for a teenager because of all these outside factors. So I understand why you would assume anxiety, but it’s really something different. It’s not anxiety. It’s not needing to see a therapist. And I was told by countless doctors, even the doctor I saw just two years ago in Philly said, well, your tests all came back clear. The biopsies came back clear. I’m not sure what to tell you. And I said, but what? There has to be a connection here, you know? And I always told the gastroenterologists about the period pain and about every symptom. I said, you know, these organs are all right next to each other, right? They must be having an impact. And they said, oh no, you should see a gyno for that. And I said, okay, sure. And I did. I saw lots of gynos. And they would talk about most recently I was told something about pelvic floor disorder or she wanted me to go to some pelvic floor therapy. And I said, I respect that answer. And I think it’s a valid answer. I just don’t think that’s what’s going on. I think that my symptoms are too all over my life to be that. They’re too severe to be that. And she said, well, we’ll put you on birth control. That would be the treatment for endometriosis anyway. And I said, I really don’t think that’s true.
Emily: That was Alea Pierro who has spent more than half of her life, she’s 33, suffering from debilitating chronic pain. She had a hunch, a while ago, that she had endometriosis, which is a disorder where you have endometrial tissue, which is basically the tissue that lines your uterus, in other parts of her body. Endometriosis is something where we really don’t actually know. There are two different schools of thought on what it is, what the root cause is. Some people think that you are born with this tissue that’s all over can be as high up as your chest cavity. Some people think that it is like a backwash that happens when you have your period. Not all of the blood goes out of your vaginal canal. Some of it gets sort of sent up and then it becomes sticky and they’re adhesions. It’s really interesting that basically like the root cause of this problem is not known and then women come in complaining of the symptoms of the problem and they’re told that it’s in their head or that it’s normal. One of the experts that we’re going to speak with is going to point out that this is the only time that we point to pain as normal. That pain is always an indication that there is something wrong and when it comes to menstruation and periods and cramps, people are told, well, that’s just, you know, part of the deal. Well maybe it’s not. Maybe it shouldn’t be. Maybe it’s an indication of something else. So this week we’re going to dive into endometriosis. We’re going to try and unpack some of it and give you all some information so that you can go forward and make the best decisions to lead your best life. Here’s Alea again.
Alea: I am so happy to finally know what’s going on. I know it’s never going to go away. I know it’s going to be something that I am going to have to deal with and manage and make hard choices about for the rest of my life or until menopause, at least, you know. But at least I have a starting point now. I feel confident that I can, I can move forward with the diagnosis. It’s the most validating feeling in the world for someone to say, we know what’s going on. You’ve lived in chronic pain for 19 years.
Emily: Wasn’t in your head.
Alea: We took it all out and you know, we know it’s going to grow back most likely, but at least we know what’s going on. I mean it’s an incredible feeling.
Stacey Missmer: I’m Dr. Stacey Missmer. I am a Professor of Obstetrics and Gynecology and also Epidemiology at Michigan State University and also Harvard T.H. Chan School of Public Health. I am the Scientific Director of the Boston Center for Endometriosis, which is a clinical and scientific research center based at Boston Children’s Hospital and Brigham and Women’s Hospital. I am an epidemiologist. I’ve focused on endometriosis for about the last 20 years. Endometriosis is a condition of girls and women of reproductive age. So usually appearing after or around the time or after a girl has her first period and then the symptoms can often last right through to menopause. And we’re actually now trying to understand better what the experience is like for women who are now post-menopausal. We believe that endometriosis affects about 10% of girls and women that’s defined by some general population data. But the important thing to understand about those numbers and about endometriosis in particular, is that the only way to define and to diagnose endometriosis is to see endometriotic lesions or endometriosis tissue, which is tissue that usually is growing in the uterus. So the tissue that is expelled during a period and instead pieces of that tissue are growing and thriving in other places in the body. Usually somewhere in the pelvic cavity around the abdomen right outside the uterus, but sometimes can be growing as far away as the lungs. Some women have had endometriosis tissue in their heart, some have had it in their nasal passages. And those locations are very rare and unusual, but all fit in this definition of endometriosis being a disease where there is tissue from the uterus that is growing and thriving in other places in the body. That tissue, because it grows and thrives, it still is responding to the body like the uterus would, the womb would during the menstrual cycle. It is responding in a way that can result in scarring in what we call adhesions, which is connecting of some of the, the tissues of the body together in a way that can cause pain and can also cause infertility.
Emily: There’s such interesting research coming out now, but I think every woman probably has experienced at some point in her life the idea of being disregarded in terms of your symptoms of pain. There’s a lot of work being done about like pain thresholds and how women maybe even have higher pain thresholds, but are often more likely to be ignored than men. And I think, you know, it is really interesting because when you get your period and you get cramps, like how do you know if those cramps are potentially symptomatic of something like endometriosis or whether that is just normal, like how do you talk to people about that in a way where they’re able to make some differentiations?
Stacey Missmer: So pelvic pain, and particularly cramps, are probably the most important issue for us to be discussing for adolescent health right now. Menstrual pain, cramps with your period, is actually the only kind of pain that we have decided is normal. You know, pain is an indication that something’s happening in the body that needs attention, but with menstrual cramps there is an expectation that many girls and women will have cramps and this is just part of the process of being female. The reality is that, that creates this issue of exactly as you’ve asked. What is then the threshold for where this is no longer normal? We usually try to teach and define and this is an issue of understanding in girls and women themselves, in their families, in their friends and at school, but also an issue of their family doctor and their pediatrician of how do you explain what you’re experiencing and how do you decide if now this is something to be concerned about? The important decision is if this pain, if the pain when you have your period, if this pain at other times outside of when you have your period, if it is impacting your life, so if you cannot continue your daily activities and whatever you have planned for that day because you’re having your period or because you’re having this pain at other times, then this is now not normal and is an issue that needs to be discussed and addressed. That expectation, that normalization of pelvic pain and menstrual cramps, means that girls second guess whether they actually are experiencing something that’s just normal and they shouldn’t bring that to the attention of others. It also means that when they do bring it up, another issue around menstrual cramps and pelvic pain is that this is often embarrassing if it is an uncomfortable discussion. We know that girls and young women are much more comfortable telling people that they’re suffering from migraines than pelvic pain, even if their pelvic pain is having a huge impact on their lives. But again, when they do bring it up with friends and family, often their response is, oh, that’s just part of being a girl.
Emily: Right or like welcome to motherhood or womanhood or whatever.
Stacey Missmer: Exactly, exactly. And the fact is if you’re life is being impacted, if you’re not able to do what you want to do, and certainly if you are, one of the things that we know from particularly adolescents and young women with endometriosis and with pelvic pain, is that it impacts their life in a way that they start planning around when they might get their period because they’re concerned about having this pain that they will not be able to function so they will plan to be home. They will. Girls who have this issue chronically will often choose not to audition for the school play for example, because what if I can’t be at the practices because I’m having this pain or what if the night of the big performance I happen to get my period and I now can’t perform? They often will choose not to go out for sports because again, this same anxiety around what happens if I happen to to have a terrible pain episode then? If you are changing plans for your life, if your hopes and dreams themselves are being impacted by this experience, this is not normal.
Emily: And I think it’s important to mention that this isn’t, you’re not speaking from anecdotal experience like you’ve done clinical trials looking at this specific sort of quality of life measure. Maybe quality of life isn’t the right use, but like you know mental and physical outcomes based on women who have endometriosis.
Stacey Missmer: Absolutely. There have been several large population studies both in the United States, but also across the globe, that have found very consistent findings of living with endometriosis and living with pelvic pain and found that there have been some large surveys that have suggested that on average girls and women experience what they referred to as two bed days per month, meaning days that they couldn’t conduct their normal activities, whether it was at home or school or work because of this pain. About a third of the women report that their pain symptoms impact their relationships with family, their performance at work and school, their partner relationships. These are very robust data that are consistent. Also there have been two large studies, the calculated the economic costs of endometriosis and the annual economic costs are at $69 billion per year in the U.S. That’s on the order of rheumatoid arthritis, but also surprising to many that’s on the order of diabetes that this is a very impactful disease and that cost includes the process of diagnosis, the medical and surgical treatments, but also work and life productivity impact, which again is one of the main areas for this disease. Having a huge, both personal but also public health and economic role.
Emily: I think it’s really important that the way that you have sort of explained that is talking about women missing out on these things or planning to not be a part of something, you know, withholding of things that might be joyful or that might promote future education or work advancement. I mean that’s like very important to me to emphasize because I think so often we think, and I can remember being in school and like somebody would say like, oh, I have awful cramps. I need to go home. I mean everybody thought that she was making it up right and
Stacey Missmer: Exactly. She’s trying to get gym right?
Emily: Right. Totally. Like I don’t want to swim. I don’t want to go to school. I didn’t do my homework. Like whatever. That is not what is happening here. The idea that women are planning ahead knowing that they’re going to be in such discomfort that they can’t make commitments to things reframes that idea in a powerful way, right? Because it’s not like you’re planning to skip a class. Like you’re, you know you can’t sign up for something that you might want to do because of this condition. I’m sort of curious like, because the diagnostic is surgery most of the time I would imagine people are in pretty extreme situations when they decide to go forward with that procedure even though it’s not a, you know, super invasive or long term recovery or something like that, but just the idea of surgery I think scares most people. Or people are reluctant to just, you know, go under like that.
Stacey Missmer: Oh, sure. Right.
Emily: Is there any study or information on how many people go in for endometrial surgery? And for endometriosis specifically and they don’t find anything?
Stacey Missmer: That’s a great question. So first of all, we know again from some very large international studies that fairly consistently over the last 10 to 15 years it’s been pretty stable from the time of symptoms start to that definitive surgical diagnosis is on average seven years and the upper bound of course is longer than that. In the largest study, the shortest amount of time was two years and then the longest amount of time was over 20 years. And as you described, some of that is very reasonable because we don’t want to rush to surgery and particularly in adolescents and young women, that should be a very thoughtful, careful process. Another thing that comes into play there is geographic and insurance and economic access to that level of diagnosis and care which is another issue that comes into play, certainly in the U.S. but in many parts of the world. But we know that many girls and women probably, the best guess, and this is getting into less definitive evidence, about 50% of those who present with pelvic pain and are treated with oral contraceptives without a definitive and endometriosis diagnosis actually usually do quite well, but that suppression of the ovaries, that suppression of the menstrual cycle actually helps quite a great deal. Now in terms of when they actually come, finally, for that surgical evaluation, what proportion have endometriosis? That has varied a lot depending on the population, so in adolescents most of the reports suggest that the confirmation for endometriosis is above 90%. Now you really hit the nail on the head in describing why that probably is. It’s probably because we’re very careful about who ultimately is sent for surgery among adolescents, so we’re narrowing the group down to those who we’re more and more certain actually have endometriosis. In adult women, particularly thinking of women in their thirties is the typical age range, their early to mid thirties, the endometriosis confirmation rate at surgery is about 55 to 60% so just shy of two thirds. And among those women, the other diagnoses end up being chronic pelvic pain without a more definitive cause. Some of the women, the pain experience is attributed to uterine fibroids, but we’re at about a little over 50%, a little less than two thirds in adult women by the time they come for surgery.
Emily: And are fibroids something that you can’t see on an ultrasound that that’s another one that requires a surgical confirmation?
Stacey Missmer: So you can see fibroids on an ultrasound. You also for endometriosis, so the primary form of endometriosis, which is that tissue that’s growing right on the surface of organs in the body. That you cannot see through imaging, through an ultrasound or through an MRI. There’s one form called an endometrioma. And you know, we’ve not helped ourselves that these terms are also complicated and long, but.
Stacey Missmer: I know seriously, just something short and sweet, right? Which is partly why one of the reasons why more people have heard of fibroids than have endometriosis is partly because endometriosis is terribly named. But this endometrioma, so it is endometriosis tissue on the ovary that grows into effectively a type of cyst on the ovary. That we can see with an ultrasound. Again, it gets influenced by patterns of referral, but that we can see. One of the things that we’re noticing right now is we’re currently observing in these large, you just referred to them, in these large, women’s based cohort studies, The Women’s Health Study, The Nurses’ Health Study. We’re seeing a larger number of diagnoses of endometriosis in postmenopausal women that we had believed we would see. And we think that some of that is now the ability to pick up the ovarian endometriosis with an ultrasound and that these women are in an age range where routine exams confirming the absence of ovarian cancer and those types of things are what’s picking it up. We know that we have these really overt subtypes, so there are women who just have that superficial disease. There are women who just have the ovarian cysts. There are women who have what’s called deep endometriosis, which means it looks like it’s on the surface, but when you look through imaging or through surgery, it’s actually growing and infiltrating into the tissue layers. We know that that superficial disease appears. Some of the lesions are red, some of them are clear, some of them are bluish black, and so there’s this obvious variation. Also, we know that about one third of women with endometriosis present with infertility and about two thirds present with pelvic pain. So all of that variation is what currently we’re working on to try to define and that might relate to what the causes are. And the causes are so, figuring out the causes, is so critical not only to improve targeted treatments that may vary based on the cause, but also we absolutely need to be thinking about prevention and ultimately also cure of this disease.
Emily: Well, and I feel like so many women now reluctant to go on the pill for long periods of time because we know that that has other detrimental consequences to it. But I also think it’s interesting that women who are post-menopausal could still be suffering. Is that because they’re on hormone replacement or that’s just
Stacey Missmer: So we are actually that’s a study that we’re looking at within the large women’s cohorts right now. What has been published so far, are all basically reports of women who are post-menopausal, who are experiencing symptoms of endometriosis and then diagnosed with endometriosis. It looks like all of them are exposed to hormone replacement therapy or post-menopausal hormones,
Emily: Which is pretty logical. So like somebody listening who doesn’t understand this, I feel like we should just sort of break that out, that like it’s the estrogen that is making this endometrial tissue painful.
Stacey Missmer: Still active essentially, right, right. So we think that that’s true, but that understanding is very new. You referred to sort of the backwash of endometrial tissue. So this theory is called the Sampson Hypothesis. So the Sampson Hypothesis is from 1927, so we’re almost 100 years since this suggestion was raised. We basically we know that most of the endometrial tissue during menstruation is sloughed off and released, you know, externally. Small fragments, small pieces of the tissue go moves as this backwash moves in a, what they call a retrograde fashion up through the fallopian tubes into the peritoneal cavity. But that happens for probably all women. The data are that it’s been observed in 96% of women. But it probably means that we all have that experience. And exactly as you said, then there has to be a difference between, there’s some women who probably have a larger volume. So for example, girls with a müllerian anomalies, so anatomic differences in their reproductive organs. Girls with what’s called cervical stenosis, which means that the cervix is more rigid and would be obstructing some of the flow of the menstrual fluid. We know that they are at higher risk. We also believe that there’s essentially a working together of the hormonal system and also immune function. So we know that women with endometriosis have a chronic heightened inflammation state that that immune response is less effective in women with endometriosis. We also have emerging data that women with endometriosis have a higher risk of some of the autoimmune diseases like rheumatoid arthritis and Lupus. And so it all may indicate this multi factor influence on why this tissue can implant thrive and grow. And there’s also hypotheses around to thrive and grow, they need to have blood vessels grow and they need to have nerves grow. And so experts around vascular biology and experts around nervous system and neurology are all being drawn to attention to this field, which has been one of the issues because again, where endometriosis hasn’t been a big topic despite its prevalence and impact and also has received very small amounts of funding from the federal government. Endometriosis doesn’t have philanthropic foundations funding it. And so pulling all of this expertise from many, many different fields is really what’s critical at this point in time. And the more recent attention is improving that. But that’s one of the things that needs to be leaped forward.
Emily: Will you talk to me a little bit about how this has changed over time? I mean, I feel like it’s on our radar much more now than it was when I was a kid. I’m 42. In my lifetime, I feel like it’s come into the purview more. But I wonder whether like, you know, it’s sort of hard to measure the incidences of, you know, when people are diagnosing it more. That I’m just sort of curious if there are other, like whether it’s, you know, obesity, metabolic relation. I mean we know that there’s a lot to do with the metabolism and inflammation, so if that’s a stressor of some kind, are there trends over time that you can talk a little bit about?
Stacey Missmer: We have seen an increase in attention and we’ve seen a shift of the age at diagnosis to being slightly earlier, but we’ve not seen these dramatic shifts that suggest that something’s happening very different at the population level. It really, as you explained, seems to be more of knowledge and access to care that’s picking up on accurate diagnoses of those who otherwise might not have been diagnosed. The obesity relationship is actually really fascinating for endometriosis because one of the few very consistent risk factors to be found is that actually for endometriosis, leaner women are at higher risk. It’s an unusual pattern and it’s true for pre-menopausal breast cancer is associated with leaner women. While post-menopausal breast cancer is associated more with obesity, we know that endometrial cancer is associated with obesity. Certainly diabetes and heart disease are associated with obesity, but for endometriosis it’s more prevalent in lean women and we still, we’ve done quite a few studies trying to look at some of the biomarker differences between lean and obese women with endometriosis between women without endometriosis. And it’s still unclear why that pattern is appearing. But it’s a very consistent pattern.
Emily: Dr. Missmer’s work is so important because it is two fold, right? It’s looking at the scientific process of endometriosis spreading, how to diagnose it, the different kinds of endometriosis, which we haven’t really talked too much about, but there’s sort of like cancer. There’s different types. Some of it will go into the tissue, some of it will be more superficial, but partly because we don’t diagnose this with any imaging. It’s all sort of up to the surgeons who go in and try to remove it to then sort of try to identify it. But the other part feels just as important to me. This idea that when women or adolescents go in to their doctors and they say they’re in pain or they start planning their schedule around when they’re going to have their period, for God’s sakes, take them seriously. This is like, such a theme I feel like on this podcast and it makes me so angry because it’s like again and again, we hear women are basically sick and they’re being just shoved aside and it’s like, enough is enough. I feel like the assumption should always be, if somebody says they’re in pain, you believe them until you have further information to not believe them. The assumption should not be that they’re making it up. And I feel like they’re, you know, the consequences for this are serious, whether it’s missing school, the extra curricular activities that she mentioned. I mean like that’s, you know, heartbreaking. Maybe it’s not tragic, but over time women have reported to us how they’ve lost their jobs, how their marriages have ended, how they feel like they can’t be themselves anymore. And we’re going to hear how women suffer from inflammation more when they have endometriosis, which puts them at risk for all kinds of other problems. I mean, obviously I’m feeling revved up about this and in part it’s because we heard from so many women, you know, we’ve covered a lot of really serious topics on this podcast, but for some reason this one feels so important because there is literally an outcry of women when you mention the word endometriosis online, who say like, I think I have it. I’m not sure. I’ve been to 20 doctors. Everybody thinks it’s in my head. I’ve been told to go to a therapist like, but I’m in so much pain that I can’t function and it makes me feel just, you know, a little debilitated. So I’m really excited about the researchers that we’re talking to and certainly these women who have been brave to come forward and share their stories with us. So up next we have another woman who’s going to tell us about her personal experience suffering from endometriosis.
Leah Battista: I’m Leah Battista and I was diagnosed with endometriosis in August of 2018. However I did have symptoms of endometriosis going all the way back to when I was 15 years old. But the symptoms got progressively worse after my first pregnancy and didn’t get any better. I went to multiple doctors and had internal ultrasounds done and had blood work done. They just kept coming back and telling me that there was nothing wrong with me and that painful periods were normal. There were other symptoms such as chronic fatigue and lightheadedness and shortness of breath. At the time, I never put two and two together that that could be caused by endometriosis. And so throughout my journey with it, I realized that those were all caused by the endo. I spent many years in a lot of pain and a lot of, I guess, struggles with trying to explain to my husband and my boss as to why I no longer was the person that they knew. I no longer had the energy to do the stuff that I could normally do. And it was really making a really negative impact on my family life, but also my work life. And so when I finally got diagnosed and did research and realized that all of these symptoms were associated with endometriosis, it validated everything that I had been trying to explain. And it was a sad day to find out what was wrong, but it was also a happy day because I finally had an answer to all of my ailments that were unexplained.
Emily: Can you describe for us a little bit about what the pain has been like at, you know, it’s sort of worst point for you?
Leah Battista: The worst point, I would say it started in January of 2018 and every month when I would start my period, I had excruciating pain to the point where I couldn’t stand up straight. So I’d be walking around like a hunchback. I couldn’t get out of bed for, you know, two or three days out of every month. And I struggled to do simple things like even just getting up and going and sitting at my computer to work was painful. But it got to the point where it was so painful that I would feel like I was going to puke or pass out because my body couldn’t handle the pain and so I kept going to the doctor and they kept telling me it’s normal, you know, take some Ibuprofen.
Emily: Have you gone back to any of the doctors that saw you earlier on and told them what you had or like I feel like I’m getting so angry hearing these stories over and over again of women basically saying, hey look, I’m in a lot of pain. I need help. And being told that either it’s psychological. Or we’ve had a number of women tell us that they were sent to a gastroenterologist or that they were told like, well you know, getting your period hurts. Like kind of suck it up, honey. Like it’s so hard for me to hear anecdotally what you all have been through. And I wonder whether there’s any kind of, I mean, I guess the nicest way to say it would be education, where you could go back to those doctors who said all that to you and say like, actually buddy, guess what? This is what I had.
Leah Battista: So I did go back to one doctor and it wasn’t one that I had seen a bunch of times and told, you know, I had this pain. It was actually the admitting physician when I went to the emergency room in September for abdominal pain. The emergency room actually ended up telling me that I had cancer and then sent me to another hospital because it was a small, small town ER that I was at. So they sent me to the cancer unit in the next town over. And luckily I got there and the gy con on staff said, I don’t think that you have cancer.
Emily: Why did they think you had cancer?
Leah Battista: They saw a mass when they did the internal ultrasound. So in retrospect, I now realize that that was very lucky because had they not seen the mass in the internal ultrasound, then I would not have been diagnosed. They wouldn’t have ever gone in and done a laparoscopic surgery if there was not a mass there to investigate. It ended up not even actually being a mass. What it was was my left ovary had gotten pulled down from an adhesion that was just, it had an endometrioma on it, which is a basically like a blood filled cyst that’s filled with old blood. And it had pulled down underneath my uterus and then adhered to my other ovary. And so my two ovaries were stuck together by this gooey, bloody adhesion that in the ultrasound looked like a gigantic tumor.
Emily: I mean, I feel like it’s irresponsible for them to have, you know, said, oh, we think you have cancer by looking at a mass. You know what I mean? A mass could be so many different things. I feel like you’ve already been through so much. It feels incredible to me that you had to go through that moment also.
Leah Battista: I think it was a new doctor and I mean it was, it was a younger guy, so I think that he was just still learning that you probably shouldn’t tell somebody they have cancer until you know for sure.
Emily: Right, right. So, but you said you did go back and speak to him after the fact?
Leah Battista: It actually wasn’t him. It was the admitting doctor to the cancer unit. He wasn’t a part of the cancer unit. He was just the doctor that admitted me to the unit. And so they gave the case back over to him and he actually went in and did the diagnostic lap and came back and said, you have a frozen pelvis and chocolate cysts everywhere, your only options is to do a hysterectomy. And I was like, whoa, wait a second. Like that’s my only option or you think that’s the best option? And he said, that’s your only option. And I wasn’t super comfortable with that. There’s never only one option.
Emily: Good for you.
Leah Battista: Yeah. I told them that I didn’t want to go down that road until I was sure that that really was the only option because I would like to have more kids. And so he came back and said, well, you know, it’s your choice. You can choose to leave if you want, but if the cyst ruptures it’s going to cause sepsis and likely death. But again, it’s your choice. So he was trying to like scare me into having the surgery. But even at that point I felt even more uncomfortable because he was trying to threaten me into surgery that I just said, I’ll take my chances and left.
Emily: And you had one child at this point or two?
Leah Battista: I had one.
Emily: And how old was he?
Leah Battista: At the time he was 10. He’s going to be 11 on Friday.
Emily: Happy early birthday.
Leah Battista: Right.
Emily: But that’s scary. You have little kids and you’re basically now trying to trust your own instincts over the medical advice that you’re getting.
Leah Battista: I’m kind of lucky because I do have, you know, like six different doctors in my family. And so I know that doctors are just people and they don’t always know everything. And so I don’t, you know, view them as all knowing and just expect that they are always going to have the right answer. So what I ended up doing was after I had another surgery with a specialist in Omaha and got the results of that and found out exactly what was wrong, I sent the original doctor that wanted to do the hysterectomy, an email and I waited about three months because I wanted the email to come across as informative and not attacking. I needed to wait that three months so that I was no longer angry.
Emily: Good for you.
Leah Battista: And so I sent him a big, big long novel about, you know, I was his patient, this is what he recommended, this is what I found out doing my research. This is what ended up happening and the type of surgery that I had. And at the end of the letter I asked him to, you know, in the future if he has a patient with a situation like mine where it was outside of his scope or something that, you know, he was unfamiliar with all of the options to provide his patients all options, even if that means that he needs to refer them to somebody else. But most of all don’t recommend a hysterectomy as a cure for endometriosis because it’s not, and there’s so many women out there that, you know, they don’t go do the research because they trust their doctor and they have the hysterectomy and now they can’t have kids. But then they also are still in pain because it’s not a cure and it’s, I mean, it’s heartbreaking.
Emily: It is heartbreaking because it also feels like it’s such a misunderstood thing. Right? If you’re, if endometrial tissue is all over your organs and you remove the uterus, like you’re not even touching the problem. Do you attribute that to just a lack of knowledge or a hubris in some way? I mean, I just, it’s incredible to me how many women have gone through this.
Leah Battista: It’s a complete lack of knowledge. And so I don’t necessarily blame the doctors. I mean they are going off of what is considered the standard of care and what they’re taught in medical school. And in medical school, what they’re currently being taught is tell your patient to try getting pregnant, which is an awful idea because then you’re going to have somebody who may have pain relief during that nine months of pregnancy, but then they’re going to have a newborn baby and be in pain. And their problem’s not solved. They just now have more responsibilities.
Emily: And so how are you feeling now?
Leah Battista: So I just had my fourth and hopefully last surgery for endometriosis on March 26th. And it ended up being a more invasive surgery than they were thinking where they ended up having to do a three inch bowel resection because it had eaten through the lining of my colon and basically destroyed all of my colon tissues. So they just cut it out and basically sewed the two ends back together. The recovery period for that was six to eight weeks. So I’m about at that eight week mark. The one thing for me that I didn’t realize was that surgery is kind of step one or you know, surgery is an event recovery is a process are some of the terms I’ve learned through different support groups, like Nancy’s Nook. Probably going to be a good six months to a year before I get my energy levels back and I feel like my old self again.
Emily: Is there any advice that you have for women out there who maybe are suffering from this or are not sure if they have it or any things that you have learned along the way that you’d like to share?
Leah Battista: If you think that you have it and you go to your doctor and they are not supportive of you thinking that you have it, if you think that you have endometriosis, that means you’ve done your research, you know what some of the main symptoms are and that you fall into those symptoms or have them. And so if somebody goes to their doctor with those symptoms and the doctor’s not listening or does not want to do any further investigation at that point, get a new doctor. I’m so tired of doctors saying, no, there’s nothing wrong with you if your doctor is not fully listening to you and advocating for you when you say something is wrong and they just brush it off, find a new doctor. Like I cannot stress that enough. And I went through about seven or eight different doctors and still hadn’t found a good one by the time I ended up in the emergency room. So I mean I literally got lucky by having the mass that I did. I would also say that even if you’re scared of having surgery or you don’t feel like you have the finances to have the surgery, that you should try and do anything in your power to figure it out. Even if it’s going to cause credit card debt or it’s going to cause you to have, you know, a payment plan that you have to set up and pay it off over time because waiting and taking, you know, Lupron or Orilissa to mask the symptoms is not going to benefit you in the long run and likely it will cause worse side effects that are lifelong side effects. If you take those drugs and then you’re still not going to be cured. Why take a risky drug for a band aid fix that doesn’t fix anything. And do your research. Research so that you can go to the doctor and you can advocate for yourself. Like I said earlier, doctors don’t know everything and you need to go in there with the knowledge to be able to ask the questions you need to ask. Request the tests you want to have done or request the diagnostic lap if that’s what you, you know, if you really feel like you’ve got endometriosis, at least do the laparoscopic procedure. They don’t necessarily, you know, if that doctor, you don’t feel like they’re skilled enough to do the excision surgery or they’re only offering to do the ablation surgery, but you don’t have the option to go to a specialist at the time, at least do the diagnostic lap and find out. It’s worth it to know than to just sit there and wonder and guess and take medication that may or may not help.
Emily: What were some of the online resources that you found to be credible and helpful while you were, you know, sort of doing your own detective work?
Leah Battista: So I was at a major, major loss on who to contact or what to do because there really just wasn’t a whole bunch of information out there. And so when my, when I got a second opinion, and the doctor prescribed Lupron, it was like the greatest thing ever. I was like, I’m gonna take this Lupron pill, it’s going to, you know, get rid of the endometriosis or at least shrink it enough to where they can do the surgery and all is going to be great. But my gut instinct was telling me to research the Lupron. So I actually found a Lupron victim Facebook page and I had mentioned in my post on there asking, you know, saying this is what I was told, can anybody give me any insight? And somebody came back and said, you need to join Nancy’s Nook Facebook page. And so I joined Nancy’s Nook Facebook page and found that not only is it a plethora of information, but it is hundreds of thousands of women that were in the exact same place as me. So I no longer felt alone. And that was really big for me to have other women who were dealing with the same thing and at the same loss as me and find a place where I get information that wasn’t being provided to me by my doctor. And I could find with their international surgeons list, they have doctors that they have vetted, they agree with the same treatment plans. And these doctors, there’s not very many of them. You’re looking at about I think 60 or 70 in the United States. And so if you take that 60 or 70 doctors in the United States with the number of women who have endometriosis, even if they worked every day of the year, they wouldn’t be able to help everyone. There’s just not enough doctors out there.
Emily: Leah was so great to talk to because I feel like she really does her due diligence and gets into all this stuff. You know, researches doctors in a way that I applaud tremendously and advocates for herself. But she points out a really serious problem, which is that there just aren’t enough doctors who do this incision surgery well. And when I say well I mean most surgeons, the majority of surgeons, it would seem in this country who do this surgery tell patients when they do the surgery that it will regrow, that they’ll have to have the surgery again and that they’ll probably also have to be on medication. And it turns out that’s not actually true. The next source that we’re going to talk to who is maybe the most sought after surgeon in the country basically explains to us that like if a surgeon says that to you, it probably means that they’re not doing their job properly because when he does it, he has a very low rate of people having to come back and have the surgery again. He also makes the point, which I’m going to overemphasize, that if somebody tells you that you need to have a hysterectomy because you have endometriosis, that you need to find another doctor. That the endometriosis that’s causing you pain is likely not in your uterus and maybe not even on your ovaries and if it is on your ovaries, it’s also probably all through your abdomen. So you need to go in and talk to somebody who actually understands this disease.
Dr. Sinervo: My name is Dr. Ken Sinervo. I am the Medical Director of the Center for Endometriosis Care in Atlanta, Georgia. I’ve been involved with treating endometriosis for approximately 20 years. We have a tertiary referral center that specializes in the laparoscopic treatment of endometriosis and treatment of other pain conditions. Because we’re a tertiary referral center, we get patients from all over the country and approximately 60 other countries as well.
Emily: So talk to me a little bit about that experience. Are you doing something that is fundamentally different than what is happening in other places? You know, I think one of the things that’s important for us to bring up in this section of the conversation is really how women are often treated with hysterectomies and that that might not actually be a necessary procedure. And that’s not what you’re doing.
Dr. Sinervo: Well, absolutely. The percentage of our patients who need a hysterectomy because of their severity of their endometriosis is actually very small. It’s probably only about 3% of the patients that we treat. The great majority of those patients, we’re able to completely restore the anatomy to normal, remove all of the endometriosis. And really that’s the key to the success. Most doctors don’t actually remove the endometriosis. We’ve been believers that it’s something that’s called laparoscopic excision of endometriosis. And my original partner, Dr. Robert Albee, he was the one who trained over 30 years ago with one of the pioneers, Dr. David Redwine. He was a firm believer that this was the most effective way to treat endometriosis. When I came after my laparoscopic minimally invasive fellowship to join the practice, I quickly saw that that was the best way to treat the patients because they had such good outcomes. And the number of patients that we had to reoperate on was extremely minimal. You know, less than 10 or 15%. Whereas typically when a patient is treated with a superficial form of treatment such as ablation, which is either cautery or laser vaporization or some other energy source, that tries to destroy the endometriosis, there can be as high as 80% recurrence within one to two years, whereas we have a 5 or 10% recurrence indefinitely. So that’s a huge difference in terms of the success of the procedure and the number of patients that you have to reoperate on. And that has not only implications in terms of the ability of those patients who have a much improved quality of life, but it also has positive impact on their fertility as well. So often patients such as the Medical Director, you know, the director of our center, Heather, she was able to conceive after, you know, multiple surgeries and failed IVF because we got to the root of the disease. And we know that until the disease is completely removed, it’s going to continue to have all these inflammatory mediators that are interfering with conception and also interfering with the ability to lead a normal life. In respect to hysterectomy, you know, one of the biggest problems is, a misunderstanding that happened approximately 20 years ago. When a study came out in 1996 that said, well, when a patient’s having a hysterectomy for endometriosis, if we leave the ovaries in, as many as 60% of those patients are going to have a recurrence of their pain. So what that led to was basically a kind of a move it forward to basically perform surgical castration on those women when they underwent a hysterectomy. And even though they underwent removal of their ovaries as well, as many as 10% of those patients would still have pain, which basically gets back to the whole principle of why those all those women were having pain as many as 60% of them after hysterectomy. That 60% is very close to that 60 to 80% of recurrence of pain that we see when the disease is just treated superficially. And we know that when the disease is treated with excision, the recurrence rate is less than 5 or 10% and most of those patients can go on and avoid a hysterectomy. And there are a subset of patients who also have another condition called adenomyosis, which is a condition in which the tissue that makes up the lining of the uterus is growing into the muscle layer of the uterus. And that can cause pelvic pain as well.
Emily: And is that only diagnosed through the surgery itself or is there another way to diagnose that?
Dr. Sinervo: Well, that can be diagnosed with surgery, but it can also be diagnosed with MRI or ultrasound. But really the most important way to determine whether a woman has it is by listening to her history. There’s a lot of symptoms that do overlap with endometriosis, but you know, a lot of women with adenomyosis have heavy, clotty, crampy periods, almost insufferable back pain, painful intercourse that you know, causes pain for up to a few days afterwards. Almost a pelvic pressure that never goes away and they have kind of almost menstrual like cramping throughout the whole cycle. Because of that, that group of patients may ultimately need the hysterectomy, but that makes up 20 or 30% of the patients with endo. So the great majority of those patients could still go on to have normal reproductive lives and avoid hysterectomy for the most part.
Emily: Was that a cow?
Dr. Sinervo: Sorry, that was a Chewbacca. That’s my ringtone.
Emily: Amazing. I was like, is he on a farm? What is going on? I feel like, just to get back to the procedure itself, can you explain a little bit about what it, like where do you cut into? What are you looking around? I know one of the things that I was surprised by in researching and interviewing people for this episode has been that women can sometimes suffer from endometriosis as high up as the chest cavity and lung collapse is something that can happen to women. When you’re going in and you’re sort of basically exploring for the first time because the imaging isn’t sophisticated enough to pick this stuff up, how do you sort of look around and not disrupt things in the process and you know, if you can sort of talk a little bit about what the surgery involves.
Dr. Sinervo: Well, the most important part is recognizing all the different forms of endometriosis that can be present. The average gynecologist misses a lot of the very subtle disease because they don’t specifically know what to look for. We did a study approximately 15 years ago that looked at what areas looked typical of endo and the percentage that came back positive on pathology. And then we looked at areas that looked atypical, not quite normal but not quite meeting the criteria of endo, and about half of those areas came back positive for endo. So we learned very early on that yes, remove all the areas that look consistent with endometriosis, but you also have to remove the areas that look a little bit atypical as well. And by doing that we’re going to increase our overall yield by another 25%. So if we weren’t doing that, you know as many as a third of our patients would be coming back. But because we do that extra step and recognize all these subtle areas, we’re much more able to remove all the disease.
Emily: So that’s like a visual, something is looking atypical.
Dr. Sinervo: Exactly, we have to look very, very closely at those surfaces to identify the subtle areas. In terms of how we cut out the disease, we use a CO2 laser, or a carbon dioxide laser, as a cutting tool. And the reason we use that is we feel that it has very good effects on the tissue and it doesn’t cause a lot of damage from the areas that you’re actually touching the tissue with the laser. Whereas other forms of energy have fretted energy away from those areas so you can injure other organs like the ureter or the bladder or the bowel because of the spread of the energy that those energy sources use. And so we feel that it has very good tissue effects. The energy doesn’t spread away from there. We can use it over all the different structures in the pelvis and in the upper abdomen with minimal risk of injury when it’s used properly. And then what we do is we basically make an incision around any area that looks consistent with endometriosis. Once we have that incision around it, then we grab one of the edges and we totally undermine it. And we can see as we’re cutting that tissue out that we’ve gotten the full depth of the disease because we can see the features in there that may still be consistent with endometriosis that tell us that we have to go deeper. And by careful and meticulous dissection that way, we can ensure that we’re moving the full depth of the disease. The first thing that we do, when we get in there is we do basically what’s called, you know, exploratory laparoscopy. So we’re assessing all the different areas in the pelvis. We’re also assessing all the areas outside of the pelvis that’ll probably have endometriosis such as the first couple of feet of the small bowel before it joins the large bowel, the appendix, the first part of the large bowel called the cecum. Then we’ll look up by the diaphragm and the liver, and then we’ll swing across to the other side to look at the other side of the liver and the stomach. That way we can assess the whole abdominal cavity. If a patient has a lot of disease or a lot of symptoms that are suggestive of diaphragmatic endometriosis, you can’t see the whole diaphragm just from the belly button incision. So what we do with those patients is we also put a port, basically a little tube through which we can look at the area behind the diaphragm and we use what’s called a 30 degree scope. So instead of looking straight in front of us, the angle of the camera looks down 30 degrees from the area it’s pointed. And that way we can see around the backside of the diaphragm as well so that we can make sure we’re not missing any of the disease that can be there.
Emily: And I think for people listening, it’s important to mention that like this is a very small, this is not like a big incision that you’re creating, like across the abdomen. It’s just like you mentioned the belly button. But I think a lot of people don’t know that there are these tools that literally go in like a wire almost, right? And then you can control remotely where it moves and how it moves. So it’s minimally disruptive to the area.
Dr. Sinervo: Exactly. So what we do is minimally invasive gynecologic surgery. So there’s an incision at the belly button, which is about a centimeter in length. And then there’s a couple of other incisions throughout the abdomen depending on where we’re working that are about five or eight millimeters in size. There are some micro laparoscopy instruments that could also be used that basically use three millimeter instruments. So the port is about four millimeters in that case. So this way we can do all the surgery through these small ports. I personally do all my surgery, the traditional laparoscopic way where I’m actually controlling the camera and the camera, the port that the camera has hooked up to it, also has a laser beam going through that scope. And so wherever I’m pointing the camera is where my laser beam will be pointed as well. And then when I want to activate the laser, I step on a foot pedal and that’ll turn it on and I can make my cutting motion with that.
Emily: Which gives you maximum control. I would imagine.
Dr. Sinervo: Exactly. It’s very, very precise. So when I’m making an incision in the tissue that has the endometriosis, and as I’m moving that laser around, I know it’s going a fraction of a millimeter into that tissue. So it can be extremely precise when it’s, you know, operated by someone who’s had a lot of experience. What a lot of doctors realize is even for the worst cases of endometriosis, these are doctors who specialize in gynecology, is that almost all cases of endometriosis, even the most severe that anyone will ever encounter, can be managed laparoscopically. I’ve done over 5,000 laparoscopic surgeries for endometriosis and I’ve opened up three patients. And the reason I had to open up two of those three patients were because of the severity of the adhesions from all the other laparotomies, or large incisions, that they had from other treatments of their endo.
Emily: Meaning like scar tissue.
Dr. Sinervo: Exactly. So basically the bowel was completely stuck to the abdominal wall and I just had no space to work in and those are the only situations that I’ve really had to open up a patient. If I can get in there, we can almost always remove all the disease that’s present and have a very low likelihood of recurrence of that disease.
Emily: Do you have any recommendations for people in terms of finding a surgeon or, I mean I think there is such a range of knowledge about endometriosis out there that I feel like one of the things I’d really love to do for people listening is to give them some takeaway questions to ask their, you know, local expert to sort of see if that’s the right person for them to go to. Because as you have made the point, and certainly the other women that we have talked to who have experienced this have echoed, oftentimes people go to many different providers or they have to go have many different kinds of treatments done before they find somebody who is actually effective. That sort of buyer beware market is scary, right, and can be overwhelming. Based on both the experience that you have, knowing how to do this very well, but also the experience you have had of having lots of women come to you who have had this procedure or other procedures done before. Are there things that they wish they had known kind of ahead of time?
Dr. Sinervo: Oh, absolutely. One of the main ways that a lot of doctors use to treat endometriosis is medically. Okay. And when you treat the patient medically with endo, all you’re basically trying to do is you’re trying to suppress the symptoms that they have.
Emily: And that would be like putting somebody on the pill.
Dr. Sinervo: Exactly. You know about 50 to 60% of patients who have endo may get some improvement by being on birth control, but the birth control does not prevent the progression of the disease. So the disease will continue to grow even while you’re on it. And then when you do come off it say, when you try to conceive, your disease may have been much, much worse than it would have been had you had a laparoscopy and excision of your endometriosis earlier on. They often recommend other medications as well, which are potentially even more devastating in terms of some of the side effects that they have.
Emily: What would be examples of those?
Dr. Sinervo: You know there’s something called Lupron or other GnRH agonists, which basically put a woman into menopause and they can have deleterious you know side effects in terms of hot flashes and night sweats, but they can also affect bone density. And I really feel that no teen should ever be put on anything like Lupron because that’s when the bones are kind of maxing out on the density that they’re going to have for the rest of their life. And if you put someone on a medication like that, you can completely interfere in the maximum bone density that they have and they may be set up for osteoporosis very early age.
Emily: That sounds awful. I mean like the reason for doing that would be because of the endometriosis?
Dr. Sinervo: Exactly. And unfortunately they may have failed a surgical treatment, ablation. And then the doctor reflexively puts them on something stronger to try to minimize their pain. A lot of the time they’re well intentioned, but at the same time they don’t realize some of the severe deleterious effects that they may be putting their patients through. Another thing that some patients can have, although it’s not as common, but even if it’s a 1% or 2%, some can have joint pain that never goes away. Almost like a severe arthritis and others could have memory loss that never improves. So it’s not a completely benign drug. I’m very averse to placing patients on it. There is a newer drug that’s come out which is, you know, called Orilissa, or elagolix, and it’s basically an oral form that is very similar, in terms of the effects that Lupron has. It also hasn’t really been studied very well, I don’t think in terms of potential longterm complications from it. And we know, you know, the studies suggest that it’s a very good potential option for us to use. But I personally have seen you know a lot of failures already. About 80 or 90% of the patients that have come to me who’ve been on it and have failed it because of some side effect. So I’m not sure if it’s going to actually pan out to be as great an option as some of the literature would suggest. I personally haven’t used it myself, but again, I’ve had a lot of patients who have failed it already and it’s only been out for about a year. Other things to specifically ask your doctor is how they treat endometriosis surgically. Do they excise the disease or do they cauterize or vaporize the disease? That’s very important because instead of a 5 or 10% recurrence rate, it can be as high as 80%.
Emily: Cauterizing would be the worst of that.
Dr. Sinervo: Cauterizing and laser vaporization are going to be the two worst that have the highest likelihood of failure. Other things that you want to know is, well, what if I have endometriosis on my bowel? Is that something that you’re able to deal with? Do you have a general surgeon that you work with? Have you ever had to do a bowel resection in someone? What if it’s involving my bladder or the ureters? Are you able to treat those areas as well? If you have chest pain or a lot of diaphragmatic or ribcage pain, would you be able to treat that disease as well? What percentage of patients do you have to open up in terms of trying to remove all the disease that’s there? As you know, mine is less than one in several thousand. If someone’s saying as high as 10% that might be a bit of a red flag as well.
Emily: And these are all rates that doctors should know. I mean, I think patients often feel very overwhelmed going into a doctor’s office and saying like, what is your rate of recurrence? But it is a fair question to ask of any surgeon right?
Dr. Sinervo: Absolutely. That goes towards the success that they have surgically and then that goes towards what is the likelihood that they’re going to be putting me on these other medications. And then sometimes what these doctors will do is they’ll do a surgery and then they’ll recommend one of these other medical treatments on top of it, which to me suggests that they’ve got very poor faith in the ability that they’ve been able to excise all the disease. We almost never put a patient on a suppressive medication afterwards except for possibly birth control when we’ve done some work on their ovaries. And the only reason we do that is to allow the ovary to heal for about three months. And then after that they can either come off the medication or if they want to try to minimize the likelihood of having more cysts in that ovary or managing their bleeding or things like that, they can stay on the medication. But we don’t routinely place our patients on a long term suppression, and despite that, we still have extremely good results. You want to know, is gynecologic surgery and minimally invasive gynecologic surgery, the only thing that they do? Or do, they do obstetrics, and if they’re doing obstetrics, that’s probably the great majority of what their practice involves. And so they’re going to be gynecologist and a laparoscopic surgeon even, you know, second third or fourth down the list. Again, that reflects the amount of volume that they do and the amount of expertise that they may have. And so, you know, while there’s a lot of very good generalists out there, if you really want to have the best chance of having a minimal recurrence of your endometriosis, you want to go to someone who laparoscopically excises all of the disease that’s present and does a large volume of it because that’s going to allow you to deal with more difficult cases more easily and more thoroughly. And you want to be able to know what their recurrence rates are. And if they say, well, you know, there’s a good chance that we’re going to be operating on you again in you know, six to 12 months or one to two years, then that’s a bit of a red flag as well because typically if more than 85 or 90% of those patients get out to three years without having a recurrence, you’re probably not going to have a recurrence in the future. So those are important things to know as well.
Emily: It seems like there are sort of two schools of thought on what endometriosis is like, just like this sort of like root idea of are you born with this tissue outside of the sort of like pelvic area or does it actually spread as a sort of like backwash from like your period that’s not getting properly cleaned up and removed afterwards. And I wondered from a surgical perspective, like when you go in and you look at endometrial, I assume we’re calling it endometrial tissue that is not in the typical areas. Does it look like say lung tissue or does it look like endometrial tissue? Like can you make any sort of visual judgment about what it is? Because I think it’s sort of interesting to me to think like when you were saying women who get put on the pill that doesn’t stop the progression of their disease, that it still is growing, that they’re just not feeling it because, you know, their ovaries have basically been turned off so their estrogen is not being sort of cycled the way it is naturally and therefore they’re not experiencing the pain that they would with a normal natural menstrual cycle. But that’s not stopping the development of this tissue. Can you just talk a little bit more about that? Because I think there’s still, I’m still confused honestly, about which one it is and like does this just always progress or like does it stop? You know what I mean?
Dr. Sinervo: Well in terms of theories of developments of endometriosis, long time ago a doctor named Sampson came up with the idea that women menstruated out the ends of their fallopian tubes. A lot of women do about 85 or 90% of women do menstruate a little bit of that bloody fluid through their fallopian tubes. But only about 10% of women get endometriosis, so that’s one of the reasons why I think that that doesn’t really explain the whole thing. The other thing is we’ve never ever been able to show a live endometrial cell from the lining of the uterus implanting into the peritoneal tissue that’s in the pelvis. The other thing that’s very important is around 7 to 10% of stillborn fetuses that have been examined have been found to have endometriosis at birth or the tissue that has the ability to become endometriosis. Another thing that’s very important is that biochemically, the endometriosis is actually different than native endometrium or the lining of the uterus, that it has its own ability to produce estrogen as well. And so what happens is even though you’re on the pill and you may have a small amount of estrogen within it, the endometriosis itself is producing its own estrogen, which kind of feeds itself and continues and allows it to grow. So that’s why despite being on birth control and the progesterone in the birth control and the progestin in the birth control helps to minimize its growth, it doesn’t completely prevent it because it has its own ability to kind of autoregulate and grow despite that suppression. I personally feel that women are born with or have the cells that are, have the ability to become endometriosis, have already been laid down embryologically once they start having periods, the great majority of women have some pain within the first six months of their menstrual cycle starting. So about 65% have pain within the first six months. And within the first, you know, five years or so, about 80% will be having pain. Only about 10 or 15% of patients have little or no pain associated with their endometriosis. And you know, some of those patients will present more, or later on in life, with a pelvic mass. And that’s how the endometriosis is discovered. But for the great majority of them, they’ve had it their whole life. As soon as they start menstruating, the disease becomes active. But the good thing there is that if you recognize the disease and recognize it early, and that’s another problem, it takes about 10 or 12 years for most women to get the diagnosis of endometriosis, although they’ve mentioned it to their doctors and they’ve seen 10, you know, other specialists or 10 doctors, on average, before they finally gotten the diagnosis. If we can make that diagnosis earlier, say a couple of years, we’ll be able to prevent a lot of the more advanced disease and we’ll also be able to prevent the recurrences as well because if more of those women are being treated with excision of their disease, they’re going to have a much lower likelihood of recurrence. The one caveat there is some women haven’t fully expressed their endometriosis by the time they’re 16 or 18 and so as they get a little bit more exposure, to endometriosis some of that may be expressed a little bit later on in life. So they may have a little bit higher recurrence rate of maybe 10% instead of say the 5% we may see in someone who’s 25 or 30 but still it’s going to be a much lower recurrence rate. And typically they’re not going to have that really, really bad disease that we see in someone who has not been suppressed or has basically a different type of endometriosis that allows it to progress much more rapidly and much more aggressively causes more severe disease.
Emily: So this is sort of an offshoot, but I had heard that men can also have symptoms like this, that may be endometriosis, even though they don’t have a uterus, are there cases of men having endometriosis?
Dr. Sinervo: Yeah, there are. And typically most of those men have been men who’ve had
prostate cancer and they’ve been exposed to medications like Lupron. And so what that has done is it’s kind of changed the biochemistry in the pelvis and allowed some of that testosterone or the precursors to be kind of shunted over and getting some estrogen development going on there. And so what happens is because they’ve originally been developing embryologically, some of those cells have been laid down. Typically a male once they hit puberty, they were producing predominantly testosterone that has a negative impact on the endometriosis or the cells that could be there. But when they start changing the hormone makeup with Lupron and things like that, that’s when you can get the shift in the hormone balance, which could predispose them to it. It’s a small number of men that, you know, we’re talking about a handful of men out have billions that have been around.
Emily: Well and that must be very hard to diagnose.
Dr. Sinervo: Yeah. And I think it’s really something that you’re probably going to be seeing in someone who’s older as well, but it is one of those things that has been recognized in the literature, but at the same time we’re talking about handfuls of men out of, you know, billions.
Emily: Yeah. I mean, I’m just curious because I feel like there are more and more reports of men experiencing sort of estrogenic side effects. Like there’s this story that was circulating on the Internet about men using women’s deodorant and like Degree deodorant apparently has a lot of estrogen in it. And that they felt like they were growing breasts while they were using this deodorant and when they stopped it sort of subsided. I think there’s a lot of talk about like the hormones that are added to food and what not. And I wonder whether any of that will, you know, sort of increase instances of these kinds of things that are traditionally seen in women in men
Dr. Sinervo: In terms of, you know, things in foods, we know that soy-based products are probably going to be much higher, much more likely to have phytoestrogens in them. Okay. And that’s one of the common sources that we can get it in our diet. I’m not sure about the deodorant that has been reported. I’m glad I don’t use my wife’s deodorant. I have my own. But at the same time, yeah, these are probably, again, rare cases and I don’t know if we really want to make too much of that.
Dr. Sinervo: But at the same time, yes, it is possible.
Emily: So wait with soy, something like that like, can you talk a little bit about the interplay with phytoestrogens?
Dr. Sinervo: So anything soy-based is much more likely to have estrogen or phytoestrogens within it. So you know, women who are vegetarians probably have a lot more soy in their diet or maybe someone from an Asian background where they’re eating more soy, they may be predisposing themselves to a greater stimulation of their endometriosis because of that, those phytoestrogens. But what if someone has their endometriosis treated with excision? Well, if it’s done well then the likelihood of them having any more endo is going to be small because they’ve had good excision. They could probably have soy or other things with phytoestrogens in them and probably not be at risk of having a significant increase in the recurrence of their disease because for the most part it’s already been removed.
Emily: And so with somebody who is trying to do some, you know, preventative or treatment before a surgery, would it be worth like, do you recommend removing soy from the diet and seeing if that has any impact on how somebody is feeling?
Dr. Sinervo: Well, yes you can do that. You can try to limit your exposure to soy. You can also try an anti-inflammatory diet, which is very beneficial to a lot of patients because endometriosis is inflammatory itself. If you’re adding things in your diet that are inflammatory as well, you just kind of getting hit on the inside and the outside of your bowel in terms of the inflammation, taking an anti-inflammatory diet that limits gluten, lactose, eating things that are more organically grown, and even meats. You know, we think of, well how can you have organic meat? Well basically it’s grass fed beef free range chickens that don’t eat soy meal. Soy meal is very commonly fed to cattle that’s raised in a non free range fashion, not grass fed fashion. And so that soy phytoestrogens get embedded into the cell membranes. And so that there’s a little bit more inflammation in the cell membranes of those cattle.
Emily: And then the last thing I wanted to touch on was when women go through menopause, if they’re on any kind of hormone replacement that can also stimulate this kind of endometriosis. So women who might think like, well, I just have to make it to menopause. It’s like, well, it sort of depends again, at that point, if somebody is not on any hormone replacement though, you will see the disease subside as it would sort of like pre-puberty, right?
Dr. Sinervo: Again, not necessarily so. Okay. And the reason for that, if we remember we talked about the studies that looked at when women had hysterectomies and they had their ovaries removed. Ten percent of those women continued to have pain, whether or not they were on hormone replacement therapy. Yes, some of those patients, when they go into menopause, you know, maybe the great majority of them may have improvement in their symptoms, but some of them will continue to have, you know, persistence of their disease whether or not they’re on hormone replacement. And probably being on hormone replacement will definitely increase the likelihood of persistence in their pain. I put my patients, whoever have to have both ovaries removed, and that’s the minority of my patients. A great majority of them, I want to try to keep their ovaries because we know the positive impact that having your ovaries have in terms of cardiac health, bone health and mental health. All of those are important reasons to keep your ovaries. We try to keep them for the great majority of the time, but in the small percentage that have either had their ovaries removed and come back to remove their endometriosis or the ones that we treat, we’re going to be putting on estrogen replacement therapy right away. You know, some other doctors will recommend waiting six months because they want all the other endo to shrivel up and die away. Well, that’s telling me that they’re not removing all the endo in the first place. The bottom line is do your research. Talk to your surgeon. Find out if they’ve got the skills to treat this endo no matter where it is, what their likelihood of success is, what the likelihood of recurrence is. And do they recommend any postoperative treatments? Which again can be a bit of a red flag.
Emily: As everybody on this episode has emphasized, you have to be your own advocate and if you don’t think that you are getting the medical respect that you deserve, you need to go find somebody else who’s going to listen to you because it’s estimated that one in 10 American women suffer from endometriosis. But the truth is that like the only way to diagnosis is to have the surgery. So it’s far more likely that there is a, that’s a larger number basically. Right, because that’s only the population of people who have been clinically diagnosed, meaning they have had surgery and it’s been confirmed that they have endometrial tissue outside of their uterus. I feel like one of the things that we wanted to do was we wanted to give voice to all of the women who have suffered and we basically did a shout out and asked people to send us audio introducing themselves and sort of what their experience with endometriosis had been like. And it was heartbreaking to listen to these women, so many people who had been to different doctors, who had suffered in fertility, who had not been believed, which then obviously takes a psychological toll on the rest of your life. Feeling like you’re in pain and not having anybody listen to you, including like friends and family, husbands, boyfriends, partners, all of that. It has such a huge ripple effect on the rest of your life, on the quality of your life. So I’m just going to give them a couple minutes. I wish we could’ve included everybody, but this episode would have gone on for hours and hours. So here’s just a sample of the women that we heard from.
Sarah: My name is Sarah Trinselski. I’m 30 years old and I wasn’t able to work because of my endo pain and symptoms for over six months and eventually lost my job because no doctors could figure out what was wrong with me.
Nicole: My name is Nicole. I’m 32 years old. The worst thing that a doctor ever said to me when I went to her begging for help with my symptoms was, don’t you want to have babies now that you’re married?
Brandy: My name is Brandy Camp. I am 39 years old. I underwent a partial hysterectomy at the age of 26. I was not told at that time that a partial hysterectomy would not cure endometriosis. And as a result, at the age of 30, I found myself in an extreme amount of pain and ultimately lost my right ovary.
Marion: My name is Marion Flemming. Even for another woman who gets, you know, their monthly menstrual cramps and that if they haven’t really dealt with endometriosis pain itself, they don’t really understand. So when you call in and you know I’m not feeling well again and it starts to become a habit once a month for two, three, four days, they start to kind of get their backup right. They start to, oh okay, now you’re just being ridiculous. I remember I had no choice. I had to go in or I was facing being fired. I was there for maybe 15 minutes until I started puking and then it was, oh okay, go home.
Amanda: My name is Amanda Idebeis and I’m 42. I wish people knew that it can be pain free. I’ve just had stage three endometriosis removed after eight years of infertility. I never knew. Please get checked out.
Emily: I’m Emily Kumler and that was Empowered health. Thanks for joining us. Don’t forget to check out our website @empoweredhealthshow.com for all the show notes, links to everything that was mentioned in the episode as well as the chance to sign up for our newsletter and get some extra fun tidbits. See you next week.sign up for our newsletter and get some extra fun tidbits. See you next week.