Episode Summary:
In this episode, we dive deep into the topic of dysmenorrhea, pelvic pain, endometriosis, adenomyosis, and other related conditions with Dr. Dan Martin, Medical and Scientific Director for the Endometriosis Foundation of America. We explore the complexities of diagnosing and treating pelvic pain, the importance of patient advocacy, and the societal normalization of pain in women. Dr. Martin provides valuable insights into the symptoms, challenges, and evolving treatments for conditions like endometriosis and adenomyosis, aiming to empower listeners with knowledge and actionable steps for managing their health.
Discussion Points:
What is the difference between dysmenorrhea and pelvic pain? Dr. Martin explains the nuances between dysmenorrhea and various forms of pelvic pain, highlighting how each condition presents itself and what symptoms to look out for.
How can women effectively describe their pain to healthcare providers? Learn about the key descriptors and monitoring practices that can help women communicate their pain more effectively to doctors, leading to better diagnoses and treatment plans.
Why do so many women feel dismissed by their doctors when reporting pain? We discuss the societal and medical reasons behind the normalization of pain in women and what can be done to advocate for proper care.
What are the common misconceptions about diagnosing endometriosis? Dr. Martin clarifies the challenges in diagnosing endometriosis, including the limitations of imaging and the importance of laparoscopic procedures for accurate detection.
When should women be concerned about pelvic pain and seek medical attention? Find out the key indicators that suggest when pelvic pain might require a doctor's evaluation and what the initial steps should be for managing pain at home.
How effective are NSAIDs and birth control pills in managing pelvic pain? We explore the roles of NSAIDs and hormonal treatments like birth control pills in managing symptoms and the conditions under which they are most effective.
What is the role of laparoscopy in diagnosing pelvic pain conditions? Understand when a laparoscopy is recommended and what it can reveal about conditions like endometriosis and adenomyosis that other diagnostic tools might miss.
What are the potential risks and benefits of treatments like Lupron and surgical interventions?Dr. Martin discusses various treatment options for endometriosis and pelvic pain, including the controversial use of Lupron and the considerations for surgical interventions.
How do conditions like adenomyosis and uterine fibroids differ from endometriosis? Learn the differences between these common gynecological conditions and how each affects women's health differently.
What are the current research trends and future directions in treating pelvic pain and endometriosis? Get an overview of the latest research developments and what they could mean for the future of managing pelvic pain and related conditions.
“If pain is getting worse and not better with medication, it is not normal.” - Dr. Dan Martin
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More about Dr. Dan Martin
Dr Martin is Professor Emeritus, University of Tennessee Health Science Center; a community member of the Virginia Commonwealth University Institutional Review Board; and a life fellow of the American College of Obstetricians and Gynecologists. He has been Divisional Director of Reproductive Endocrinology and Divisional Director of Minimally Invasive Surgery at the University of Tennessee and Divisional Director of Medical Education at The Johns Hopkins Medical Institutes. Dr. Martin is Past-president of the American Association of Gynecologic Laparoscopists and the Gynecologic Laser Society
Interview with Dr. Dan Martin
A lot of that is coming from the normalization of pain in women. We know that most women have some pain with their periods, and that gets projected out to mean women shouldn't complain about their pain. It's normal. They get told that by their sisters, their mothers, their peers, everyone else. Society understands that. Society tells them that the pain is normal. Some of this pain is not normal. If the pain is getting worse, if it's severe, it's not responding to medication.
That's not normal pain.
Dysmenorrhea, which is essentially pelvic pain during your menstrual cycle, impacts between 16% 91% of women in their reproductive age. And of these women, 2 to 29% experience severe pain. So today, I interview Dr. Dan Martin who works with the Endometriosis Foundation of America. And we are here to talk about dysmenorrhea and pelvic pain. And we break down what are the symptoms, why our family members and doctors should not dismiss this pain, and what practical solutions can be. And admittedly, we don't have perfect answers yet because we do need so much more research, I have to say. So today, we're here to talk about dysmenorrhea and pelvic pain.
And this is something that happens throughout our years. It can even begin in adolescence. And I wanted to bring you on, Dr. Martin, because I was moderating a panel session that you were on, and we talked about how important it is to educate people early. So, really, this discussion is for moms of adolescents, adolescents, and even those who are in their reproductive years and beyond. So before we really dive in, I wanted you to give an introduction to your background and your passion for helping make sure women truly understand their health and and your passion around dysmenorrhea and pelvic pain as well.
Thank you, Georgie. So I'm Dan Martin, currently the medical and scientific director for the Endometriosis Foundation of America after I retired from practice, in 2016. I was previously the divisional director of reproductive endocrinology at the University of Tennessee and have been a president of 2 different national medical organizations. I spent most of my life in gynecology, particularly research on endometriosis and pain. Because of that, we understand that for a lot of painful conditions, we have inadequate types of therapy to control all of those women. If if if, for example, if I have somebody who has a large lesion of the bowel, so let's say something the size of a peanut or it's not a peanut, but let's say something size of an almond that you can feel in the bowel and it's tender and we remove that, then it's just like a pimple going away. There's almost instant pain relief. For those kind of women, we have really good control.
However, let's make that thing the size of a pimple. You almost can't find it at laparoscopy. MRIs can't see it. Sonograms can't see it. We have to and so when we try to diagnose those, we usually get those more because we were after something Health, and they were coincidentally found than because we were after them primarily. And when we get them, that sometimes helps pain relief. And a lot of women with endometriosis, there can be small lesions that cause diffuse pain. When we find small lesions that cause diffuse pain, surgery usually doesn't work.
Surgery works for lesions that cause focal pain, not for lesions that cause diffuse pain. And then we wonder, is that because we're not because it's supposed that we should be treating something other than endometriosis? Is there another disease going on and we've misdiagnosed something Health, or or we just don't know how to treat endometriosis? The complexity of that is really great.
So let's talk about from the beginning because, you know, I have endometriosis, and I know this is not a session necessarily on endometriosis because there's a lot of reasons for dysmenorrhea and pelvic pain. But I also, you know, having been part of the community, I hear so many stories of women who are in pain and who are struggling to get a diagnosis. And so this is such an important conversation because you've laid out, like, why it's so hard and putting perspective on why for so many of the women who are struggling to find answers, why it can be hard. So before we dive into that dynamic, let's start with terminology. What is the difference between dysmenorrhea and pelvic pain?
So okay. So pelvic pain is the larger term. Pelvic pain includes a lot of things. It includes pain with menses, which is dysmenorrhea. It includes pain with sex, which is dyspareunia. It includes just generalized pelvic pain, which means that there's pain everywhere in the pelvis. There are things like acute pelvic pain that we see with cysts and kidney stones and those kinds of things and chronic pain that we can see with endometriosis, adhesions, scarring from pelvic infection.
What I'm almost hearing is women should really monitor the pain to then help them be able to define it when they go to the doctor. What are the descriptive terms that women should use to describe it, or what are the things they should be monitoring so that when they do go to their primary care doctor, their OBGYN, it will help that doctor and professional help them.
In the 1970s, Arnold Kresch would've taken your question and done a research project on it. And when he did that, he would've found that there are no descriptors that are predictive of anything. The predictors the the descriptors are so all over the board that it's hard to say. If you look at things like endometriosis and kidney stones, then knowing the location of the pain helps us know where to go.
Tell me where it is. And if I can find something that's tender in that same spot, then there's a good chance that it's something organic. And organic things would be things like endometriosis, kidney stones, fibroid, ovarian cysts. There are all sorts of things that we can find that are masses that we might be able to find with a somnogram or an MRI. Or if we found them on an exam, we might be able to find them in laparoscopy. On the other hand, if the pain is diffuse, then either it is something that causes diffuse pain, which which even endometriosis can and so can dysmenorrhea because the prostaglandins are activated and there are other things that will cause diffuse pains in spite of the fact that it's focal. But you want to begin to look at something that's more for diffuse problems, and that would be irritable bowels, more diffuse, adhesions and scarring from pelvic inflammatory diseases, more diffuse.
What else could possibly help in the description, or is that sufficient enough for then the doctor to start things.
Things that make it worse. Is there something that you recognize as it makes it worse? Do certain foods make it worse? Does your period starting make it worse? Is it worse at certain times of day? Some people can make sense out of that. Since most of what I did was endometriosis, I was generally more concerned about location, how long it had been there.
Has anybody had a previous diagnosis? Has somebody made a diagnosis in the past?
It sounds like there's a lot of people who do, but then there's the question of who actually goes in to see their clinician and why that may be the case. And this is really, really important to discuss, to, again, continue to add perspective. So tell us about that data.
So one of the problems we see in dysmenorrhea in women's pain is it's normalized. But that normalization is based on reality for a lot of women. We can estimate that up to 80% of women have at least mild dysmenorrhea, and you don't want all of them seeing a physician. And we can come back to that later in terms of how they should treat themselves in the beginning. But there's about 20 to 40% who have severe dysmenorrhea, and some of those are not going to respond to medical therapy. Of that, 40 20 or 40 percent have severe pain. Only about 15% actually come in for medical care. That may be limited because some of them are effectively self medicating.
They're treating themselves with nonsteroidal anti-inflammatory medications, Tylenol, and other things that help them. Others may not seek care because of the normalization of pain in society. Menstrual problems are sometimes seen as a taboo subject. There is embarrassment, financial cost. They may not have access to a pharmacy, or they may not have access to transportation to get to a doctor. There are plenty of other concerns. But we do know that of all of those, if they don't improve on nonsteroidals, we generally go to try the birth control pills. And if they don't respond to both of those, then the chance they're gonna have endometriosis increases to about 80%.
So with all patients with dysmenorrhea, about 12 to 15% of those are gonna have endometriosis. But if they don't respond to initial therapy, it's closer to 80% of them.
So the NSAIDs, just in case people aren't clear what those are, can you just describe that just to make sure we’re not…
So those are things like Ibuprofen and Naproxen and Advil are some of the names of those.
They're our first first line of treatment. They will decrease the prostaglandin output, which is one of the chemicals that causes pain that's associated with both menses and endometriosis.
So if you try those and they take care of the problem, then, generally, you're okay. When endometriosis is a even if there's endometriosis there, generally, when endometriosis is asymptomatic, it doesn't progress. We know that we have at least 5 to 10% of women in the United States who have asymptomatic endometriosis that they don't need to be concerned about based on tubal ligation studies of coincidental endometriosis. That's more than the number of women who will present with pain. So women will either not have pain, they'll have infertility, they'll have pain, or some combination of the last 2. If they respond to nonsteroidals, then the chance they're gonna have progressive endometriosis is really low, but we worry about it anyway. So if the pain keeps coming back, you still want to get evaluated. On the other hand, if they do not respond to nonsteroidals in the 1st 3 months, 3 to 6 months or 2 or 3 months, not too many months.
You don't wanna wait long. Then it's worthwhile seeing a provider to discuss whether or not you should be on oral contraceptives to suppress estrogens. Estrogens have multiple problems. Estrogens increase inflammation in the body, and that inflammation can sensitize pain. And if there's endometriosis, that can increase its growth and increase its overall problems related to it. So we try to suppress that. If the combination of those 2 does not work in the 1st 3 to 6 months, then you probably want to consider a laparoscopy to see if there's endometriosis there or some other problem. Prior to the laparoscopy, physicians will generally consider imaging such as sonograms or MRI to see if there's any masses, nodules, cysts, anything else in there that's a concern that can be identified.
Let's step back in order here. So I'm taking NSAIDs at home before I see my doctor. What is the dose? Because I would hate for someone to go to the doctor, and they could have been helped by taking the right dose. So if we wanted to start before, like especially if those who can't afford the doctor, let's start on the NSAIDs if you've got the pain, and, and what would that dose be?
So the only dose I know for sure is… I'm so sorry. It's Ibuprofen and, I guess, Advil is it Advil? Ibuprofen and Naperson, I believe. So Ad Advil is 200 milligrams. Naperson's 275. I believe those are correct doses for I let's stick with Ibuprofen. I know that one. So with Ibuprofen, it is a 200 milligram pill that's over the counter.
And you only need to take 1?
Well, you have one of those up to 4 times a day.
And there are pharmaceutical varieties that are up to 800 milligrams. So if you want to start acting like a doctor at home, you can take up to 4 of them at a time.
So if one doesn't work and you try 2 or 3 and find that works, then by the time you're taking 3 or 4, you probably won't see your doctor, but they at least give them the information that that's how many it takes.
This would be for any type of pain. You start there, and then you can go to your doctor if it's not working to then start breaking it apart.
Yeah.
So then, the next question our refill are increasing.
You may wanna go quicker.
Oh, that's true. Of course. So then you go to the doctor. Now because you are a medical doctor, this is a perfect question to ask you. You know, social media has gotten very loud and based on the number of followers and algorithms, certain people come across as louder on social media. And a lot of people are talking about being dismissed by their doctors. And I think helping get your perspective because I think being in another person's world is so, so important and not making assumptions. So can you comment on how so many women feel dismissed when they go to their doctor and where that is coming from just so that we can all better understand that dynamic and the role that we can play to make sure we're getting the proper care?
A lot of that is coming from the normalization of pain in women. We know that most women have some pain with their periods, and that gets projected out to mean women shouldn't complain about their pain. It's normal. They get told that by their sisters, their mothers, their peers, everyone else. Society understands that. Society tells them that the pain is normal. Some of this pain is not normal. If the pain is getting worse, if it's severe, it's not responding to medication, that's not normal pain.
Now that normalization of pain in society extends over into physicians and providers who learn the same thing. And even though physicians and providers should have been taught better, they still act like the rest of society on occasion, and they normalize pain. And they tend to underestimate the amount of pain that women are having. If you have a provider who's doing that, you may need to get a provider who specializes in pain, who really has taken time to study it and understand the concepts. There was an old term that I loved, and it would parallel what you just said from about 20 or 30 years ago. Physicians tend to reify concepts. And I think reify is a neat name for those of you who understand deify that you know, deify is making something to god. Reifying it is making it a concrete term.
It is something that you can believe. People believe things that they got no business believing. And believing that pain is normal in women, nobody should believe that. That assumption has been reified by society, and we should really avoid making that assumption.
When I was younger, it was like whatever doctor said, it's like, yes, sir, yes, ma'am. And I think we're kind of just learning. We're all human and doing the best we can with what we have, and let's face it. There's not a lot of information on women's health. So there you go. So, again, patient advocacy and self advocacy is really important.
So you've tried the NSAIDs. They're not working, and you go at the time you need if the pain is increasing. You know, you've tried for 3 months. Things aren't getting better. So you go in for your evaluation. Tell us what a proper evaluation is.
So let's first back up just a second. If you're having severe local pain and it's not getting better, then you sometimes don't wanna wait 3 months. You sometimes might go quickly. So the worst of the pain is, and some of the things you can do at home or home pregnancy test to make sure you're not pregnant having a complication of pregnancy, which is one of the ones that's the most worrisome thing if somebody delays it. That and and if you have a feed so if you have a positive pregnancy test, if you're having fever and you're worried that there's an infection, those kinds of things you need to see earlier. Because that's among the first things that somebody's gonna look for when you go in to see them are things like tubal or things like complications of pregnancy, sexually transmitted diseases. Others include things like ovarian cysts, kidney stones, bladder infections, and other diseases. So that first exam, they're gonna do some tests on urine, which includes pregnancy infection.
A pelvic exam, sometimes if you don't want a pelvic exam on the first visit, can sometimes be avoided by looking at some of the other tests. And if an exam is needed, particularly since we were talking about adolescence today and preservation of virginity is still a big thing for some women, A rectal exam can be used to avoid a vaginal exam. Okay. Same thing is true with sonograms. Sonograms don't have to be vaginal. They can be rectal. So sometimes you can avoid vaginal exams. But most commonly, an exam, an abdominal exam, a rectal exam can tell you where you're going.
And then on occasion, if there's localization, if it feels like there's a mess, then a sonogram, which is like an X-ray or an MRI, a magnetic resonance imaging may be done if a nodule or a cyst is suspected.
Would testing your estrogen levels help give an indication to what might be going on?
It's rare that the estrogen levels are high. It's more common that they're just normal. Okay. So normal estrogen levels is all that it takes to cause the problems I'm talking about.
Really?
It's rare for them to be high. Or if they're high, you start worrying about granulosis, cell tumors, and those kinds of things. So when you talk about high estrogens, there is a discussion of relatively high xenoestrogens. So when someone talks about high estrogens and endometriosis, it's not that they're generally not absolutely high. They're relatively high because endometriosis has lots of biochemical differences, so when we look at endometriosis, endometriosis is the presence of endometrial type tissue outside of the uterus. Right. Endometrium itself does not have aromatase. It responds cyclically to estrogen and progesterone and has a fairly good response to progesterone.
In endometriosis, you get progesterone resistance, which means that no matter how much progesterone you get in there, it doesn't respond to it. And therefore, the estrogen levels are relatively high. So with progesterone resistance, pain estrogen at normal levels is relatively high with respect to the endometriosis cell. So when we talk about estrogen estrogen, there's more estrogen dominance than there is high estrogens.
I interviewed one doctor that talked about the ratio of estrogen and progesterone. Is that something that can be looked at as well to better understand what's going on with a woman?
We did that routinely in fertility evaluations. So when you're doing an estrogen progesterone ratio, you have to know exactly what day of the cycle it is, what you're looking for. Because in the 1st 2 weeks, there is no progesterone. All you have is estrogen. Over the next 2 weeks, the progesterone rises and falls. So you're watching progesterone do this, estrogen doing the same sort of thing. So you're watching a rise and a fall. So you're watching a rise and fall of estrogen, which means that the ratio is a constantly dynamically changing thing.
So other than looking at s at that in the in my practice, other than looking at that for fertility, estrogen progesterone ratios never Health me or my patients.
So then you mentioned, like, imaging and MRIs and things like that. Tell me how this works because in all the conferences I've gone to related to endometriosis specifically, I know that I've heard things like you can't fully diagnose endometriosis without a laparoscopy. Some have said that they have figured out ways to do proper imaging. I've heard there's 200 experts in endometriosis in the entire world. So how should someone, as a woman, if a doctor is doing these imaging tests, if the imaging finds something else, then it could be that. If it finds nothing, then it's possibly endometriosis. And if they happen to catch it on these imaging, then it is endometriosis. Like, tell us about that because this is really, really important because I have heard many, many women who are misdiagnosed, and I definitely raise my hand a lot and say, guys, there are not a lot of endometriosis experts.
You cannot just assume, if this person doesn't specialize, they are a general surgeon in OB GYN, and that is very different.
So back in the 1980s, I did a series of studies where it took me 200 patients before I could get above a 60% accuracy in diagnosing endometriosis.
Wow. With imaging?
No. Looking at it with a laparoscope. And that's only those lesions that we can see. Remember earlier, we talked about the fact that almost a 100% of women with bowel endometriosis have macroscopic endometriosis that you can neither see nor palpate. 75% of those you can't palpate, which means the only time you find it is in research studies or coincidentally when somebody is looking under a microscope. There are lesions in the retroperitoneum that are similar to that. With a sonogram or an MRI, we can find them if they're 5 to 10 millimeters or larger. Give us a 3 centimeter lesion, something the size of an acorn, anybody can find it.
One centimeter, it takes a good sonographer. Five millimeters, you have to have an excellent sonographer. And the only person I know who's ever picked up a 3 millimeter is up in Canada who does nothing but sonograms on endometriosis patients. So the more experience somebody has, the more chance there is they're gonna pick up a small lesion. So large lesions are fairly readily seen on most sonograms and MRIs. Small lesions can be missed. When Philippe Kovacs looked at what percentage are small and what percentage are large, he found that in infertility patients, 2 thirds of them are small, 1 third were intermediate, and about the twin 10 or 20 or 30% were large. In patients with pain, more than half were small, which means that more than half of the lesions in patients with pain could not be found on a sonogram or an MRI.
Then the only thing you can find for them is laparoscopy. And even after a laparoscopy, you weren't gonna find them all anyway because some are gonna be behind the peritoneum where they couldn't be seen. There's no good way to accurately diagnose all endometriosis.
There is a statistic out there that everyone talks about. There's even a hashtag, 1 in 10 on social media. So the data says 1 in 10 women have endometriosis. And I have a hard time understanding how that number came up because I think the, discussion at the first conference I went to on endometriosis held by EndoFound, which was absolutely incredible, was that it would require a clinical trial where every woman is willing to go in for a laparoscopy, and they would be tested to see if Endo was found. And based on how that trial was designed and all the different nuances, we could maybe better start estimating percentages. So so can you
Well, that's that's part of the study. And then you have to repeat the laparoscope every 10 years for the next 10 years.
There you go.
Because that 10% do not have endometriosis right now. That 10% will have, have had, or have. So that's the women who either have had it, are having it, or are going to have it in the future. That's a prevalence. If you turn that prevalence into an incidence, then the incidence is the number of women who get new cases every year. So a 10% prevalence over 50 years is about pain% per year. So that takes about 50 years just because it's easier to divide with. I forget what the real number is, but it's close to 50 years.
But it's about 2 per 2 tenths of a percent per year are going to have it at some point in time. If you look at a primary care physician who sees both men and women and has a 1500 pain population, that can be only 1 or 2 new endometriosis patients a year. If they're a gynecologist who sees more than that, then you expect they're gonna see 5 or 10 new endometriosis patients a year. Or if it's something somebody like me who did who was referred to endometriosis patients, let's see, 2.50 a year. So it's about 5 per week that I would see. Five new endometriosis patients a week every week. So the numbers are 1 in 10 is a good number for somebody. What's the chance you're gonna get to worry about it in your lifetime? But it's not the chance that you got to worry about this year. Then you get back to the question about symptomatic endometriosis and asymptomatic endometriosis.
Because for asymptomatic endometriosis, it could be 2 or 3 or 4 times that. Sure. It could easily be that asymptomatic endometriosis exceeds 30 or 40% or that the endometriosis was ….remember we talked about infertility patients more than half don't have pain?
That's me. I was "no pain." And had infertility.
And you wouldn't have suspected it. So more than half of more than half of patients with endometriosis had no trouble getting pregnant.
So for those who have endometriosis and get pregnant who also had no pain, the only time you're gonna diagnose them is a tubal ligation. In studies of tubal ligation that are focused, the chance you're gonna find it is around 16%, which is a whole lot more than the 10% that we expect with symptomatic endometriosis. If we were to look at all that, that's potentially diagnosable. So 25% is potentially diagnosable, which means that it has gotten out there. It's progressed to a large enough size that it can be diagnosed. This ignores all of those microscopic lesions that we can't see no matter what we do. So in addition to the potentially diagnosable, there is a reservoir of women who have only microscopic endometriosis that you would never diagnose unless you did some sort of study where you, for some reason, went in there and took out half their body and looked at it microscopically.
And I don't think anybody's gonna do that.
So if we were to get to the bottom line and say, okay, ladies, we just because when I listen to the guests and there's, like, all this information, I always think, how can I draw a graph to represent this great information? And I feel like I would draw, like, this swirly circle of, like, all this information because it's so hard to digest. Right?
People have shown those at meetings. Yes.
Bottom line, as a woman, when should I be concerned? Is it just when I have pain and I need to do something? Because we have microscopic lesions and lesions you can see, and there's pain, there's not pain, there's fertility issues. Like so if I were a woman, what do I need to be concerned about when it comes to this?
So let's pick 3 answers. Number 1, pain that's not responding to treatment. Infertility before you're going to do in vitro fertilization. And the last one is yearly exams just so somebody checks you for things that they don't find except that they just don't find that you don't know about. The largest lesion I found pain somebody who didn't know they had was a nodule in their bowel. It was bigger than a walnut, so it was about 3 centimeters in size. It had been found by her family physician who thought she had cancer. It was big.
You could see it coming through the vagina. Oh. So he had sent her to an oncologist who'd done lots of biopsies. She showed it was endometriosis Oh, no. Their knees. And since this is coming through the vagina, to remove that gives you about a 3% chance of a colostomy because you're bringing your bowel out on your side. So we have this thing that she doesn't know is there. The doctors can find it.
We can measure it. We can biopsy it. But if we operate and remove it, then there is not a really large chance of a colostomy, but at least a 3% chance. And although most of those are temporary and you get put back down at 3 to 6 months, sooner or later, somebody's got a permanent one. And we just decided to watch it. So for the next 7 years, we did MRIs and exams every 6 months, and it never changed. It just sat there. And then she moved to North Carolina, and I lost track of her.
So I hope that she still never had anything to change. There was a series in Italy where there were around 60 or 80 patients with similar findings, and of those, only 6% either grew or developed symptoms. So 94% of women who have asymptomatic endometriosis found on a pelvic exam don't change. They just sit there.
So you don't have to do anything unless you're dealing with infertility? What about if it's if you have infertility, then do you have to take it out?
Bruce has a test called a BLC 6, which looks for inflammation. And if you find inflammation associated with infertility, then the chance you got endometriosis is really high. In one of the studies, there were 26 out of 26. I mean, these got studies with a 100% prevalence of endometriosis when that test is positive.
Now the interesting thing is you can treat it with either hormonal suppression or with surgery, and you get the same pregnancy rates no matter which one you use. If it's me and my body, I would use hormonal suppression, but the hormonal suppression is that one that half the world hates, which is Lupron. To me, 3 months of Lupron is much less risky than surgery. Lupron pain in my practice rarely caused long term side effects. We had some patients who had long term knee pain from arthritis, but that was about the only thing we got.
So a lot of these things that you hear about, these major body dysfunctions related to Lupron, I hate the fact that they occur, but at least they're rare. They're not very common at all. So contrasted with some people who get almost total body dysfunction because of Lupron, there are people who die because of laparoscopies.
So I don't. I've had 2 of my friends have patients die of fairly normal laparoscopies. We had a patient who almost died having a tubal ligation because they got the aorta vena cava. And it was only the grace of God that that one's alive for. She happened to have had it happen in a freestanding surgery center away from a hospital where there's no vascular surgeons, but the reason she's still alive is because 6 months earlier, a similar case had happened. So there was a protocol for what happened when it happens the next time. The first one is a fairly minor bleed. It was easy to fix. They fixed it, which was really exciting for them getting vascular surgeons there.
When the second one happens, the minute it happens, the person that happened to activated the protocol.
The chief of anesthesia happens to be rotating through that day. So we got a cardiovascular anesthesiologist in the room, and I was 2 doors over doing another laparoscopy just for mild endometriosis. So we've got these people coming pain. As it was, a cardiovascular surgeon had this had Health was on his way to the golf course, so he was readily available. His partner was available. So within 12, 15 minutes, we've got me and 2 cardiovascular surgeons and a complete cardiovascular set in that room working.
Had it had it had the case not happened 6 months earlier, I don't think we'd have had all that, and I don't think she would have survived. I don't like Lupron, and I don't like Health. But somewhere between the 2, you gotta make a decision. So if I had a positive BCL 6, I know I take the medication because I've been around surgery my whole life, and I know the dangers there.
I guess that's a helpful perspective because there's a lot of advocates who are very, very, very much against Lupron. You know? So it sounds like you're validating that, but it sounds like women are just in a tough position. So what about birth control? Because I I've I I know that for the BCL6 study, which is ReceptivaDx
There's some uncommon to rare side effects of Lupron that are devastating.
Messes up the immune system and whether the Lupron actually causes the problem or those were problems that are already there that gets worse while people on Lupron is whether it's truly a cause or an association, we don't know. But there is concern that Lupron could be part of the problem. And due to that, there are plenty of women who just will not ever take Lupron. They encourage people not to take Lupron. The interesting thing is that in spite of those side effects, there's at least one study in which almost 80% of people have significant side effects, but 60% of those got such good pain relief that they'd encourage people to use it. Got it. You get this from both sides coming on. The good thing is we now have a GnRH agonist.
We now have GnRH antagonists that are capable of doing the same thing, that can be titrated better, that have fewer side effects, and we may be able to avoid some of those. And we're waiting to see if the newer versions of that don't actually do the same thing and get and fix it so that we don't have to use it anymore. So hopefully, we can replace Lupron with some of the newer medication so that that's no longer a concern.
So we're just waiting for word on those.
When you get into treatment and pain when we get past what happens in a normal OBGYN office or pain somebody who does endometriosis, you get into all of the supportive measures that get into the things you're talking about. Pelvic pain therapy, physical therapist, pelvic pain physical therapist, pelvic floor physical therapist, acupuncturist biofeedback people, supportive measures, herbal therapy. There are a lot of different things that can be tried in women with chronic pain to try and decrease that pain and help mitigate the problems that neither surgery nor hormonal suppression will fix.
By the way, we didn't finish this thought, and I apologize for that. There's just so much to talk about. The birth control pills. So some use birth control pills, and I wanted to understand when and why that's used and for whom. And then, also, I'd love for you to address a lot of people's concerns around the negative impacts of birth control on women, especially the hormonal birth controls. So talk to us about the role of birth control in pain and the hormonal aspects of it.
So birth control pills are useful for estrogen sensitive pain because birth control pills will limit the amount of estrogen and decrease stimulation and decrease that estrogen stimulation of anything that's sensitive. And things that are sensitive to estrogens include endometriosis, fibroids, adenomyosis, vaginitis, bladder infections. There are all sorts of things that estrogen can do if estrogen is not appropriately correct, pain gets worse. So birth control pills are used to suppress that, particularly for endometriosis. It's an easier thing to use than g n I j agonist, but it's like any other it's like any medication. They have side effects. And some of those side effects include people feeling like they're pregnant, bloating, getting migraines. They can cause high blood pressure and strokes.
In a small group of women, particularly in smokers, they've been associated with death. So birth control pills can be very scary, but the chance that they're gonna cause a major problem is quite small. It's small enough that in my practice, I never saw birth control pills related, stroke or or or or sick severe problems. I saw birth control pill-associated hypertension, but not strokes.
Okay. And there's concern that it's not actually progesterone, it's progestin, which is different.
We get concerns about whether things are synthetic or natural hormones. Some people are sensitive enough that they can tell the difference. I think that for most, in my practice, most women could not tell the difference.
So then you've mentioned adenomyosis a few times, and you mentioned, uterine fibroids. So can you differentiate just so, again, we can get clear on terminology of the difference between endometriosis, adenomyosis, and uterine fibroids?
Okay. So let's look at the endometrium and adenomyosis and endometriosis because the 3 are related. So endometriosis is where endometrial-like tissue, the tissue that's normal inside the uterus, gets outside the uterus. Adenomyosis is where that type tissue gets inside the muscle of the uterus. So adenomyosis so endometrium is in its normal position. Adenomyosis is where tissue like that is found in the muscle wall. It's adenomyosis. And endometriosis is where it's found outside the muscle wall.
Those are contrasted with fibroids, which are the muscle wall muscles growing inappropriately. So adenomyosis is an overgrowth of the muscles that are in the wall of the uterus.
And are those easier to treat than endometriosis, or are there other similar complexities?
Fibroids happen in some really large numbers.
And most do not need to be treated because they're so small. They're just incidental findings. So small fibroids don't need to be treated at all. Large fibroids can cause compression. They can cause pressure symptoms. They can cause pain. They can cause excessive bleeding and hemorrhage and anemia. So in those situations, you can treat the fibroids, and if someone is trying to preserve fertility, the fibroids can be removed.
If you're not trying to preserve fertility, hysterectomy may be a better answer. For adenomyosis, when those glands get inside the uterus, the most and cause severe cramps or bleeding and anemia, then hysterectomy is generally the most commonly accepted answer. Although there are groups who are trying to respect the adenomyosis side of the uterus without destroying the uterus. And some centers have claimed good success with it. When we tried to do that, I just sat back and could not not see that that was very useful in my patients, But that was 15, 20 years ago.
By the way, for those listening, I do have a separate episode on uterine fibroids, from one of the specialists at UCSF. And so if anyone wants to learn more about uterine fibroids, you can listen to that episode as well. So you mentioned also that because of all these complications, there's also a delay in diagnosis when it comes to endometriosis, 6 to 10 years. Some have shown greater than 13 years, which is a certain shame. I guess, are there any other things that you wanted to share about, you know, going back to the pain
I would reinforce something we did discuss, and that is don't normalize pain in yourself, in your friends, pain in your children. It's not what they need. They need pain taken care of.
Thank you so much for that. It's so true, and I really appreciate your commitment to this. What's the future here? You know, I know I had you on that panel where we moderated the session with a bunch of cross functional experts. Actually, Chris Jackson was there with ReceptivaDx working with Bruce Lessie. Are you hopeful around us starting to get better answers on
Well, we've got lots of research and a lot of people who think that they've got things that are gonna work better. There's about 15 or 20 different non hormonal medications coming out right now. The list just goes on forever in terms of things that can be used to help with endometriosis and pain. We, in the last year, published almost 2,000 new research articles on endometriosis, about half of which are on treatment. So it's a lot of research going on out there. We can always do more, and we keep hoping that they're gonna get better answers.
Do you think a diagnosis or a true understanding of what causes endometriosis is coming out soon?
I think we have pretty good answers for what causes endometriosis right now. And there are at least 4 so if you go back pain the 1972 19 seventies. 1970, I was trained that there was one reason we got endometriosis. And by 92, I know we got a youth deal with at least 2. By the time I retired, it was up to 5. And then since I had more time to read, I got it up to 18 over the next 3 or 4 years. So I quit counting. There are a lot of things that cause it, but the 4 most common things that we need to learn how to control, one is retrograde menstruation, which is likely the cause of most endometriosis.
So if we can control that, we can do better in terms of taking care of it. The second one is congenital endometriosis where malaria and rest are sitting there waiting to be activated when somebody gets close to menses. I don't know how we're gonna stop that one because that means they were born with it. And if they were born with it, the chances are they're born with it. And since it happens everywhere in your body, if you're born with it everywhere in your body, you gotta worry about it everywhere in your body for the rest of your life. So that's a real devastating theory because I don't know how you're gonna stop somebody from being born with it. At some point, they may talk about genetic manipulation and genetic engineering, but right now, it looks like only about 50% of endometriosis can be determined genetically. So that means just about half the patients that won't help.
The other two things are metaplasia, which means that cells that aren't designed to turn endometriosis will turn endometriosis. Most commonly, those are things like peritoneal cells or bone marrow stem cells. If we can stop since those have to be activated, if we can stop that activation, then we might have a good chance. But those are the most common things that we think may be causing it, and we have ways to attack 3 out of the 4 of them.
The other one the other one, you just have to wait till it gets big enough and then surgically remove it.
What about a cure?
Depends on what you mean by cure. If you mean that somebody has no pain or or gets all the babies they want, then the cure for no pain is hope you have infertility and no pain because then the pain's gone. You didn't have it in the 1st place. If you have pain but no pain but no infertility And if it's a large tender nodule that you can predict where it is, then surgery can cure that type of pain. And depending on what the age was, if we look at the chance somebody's gonna have repeat surgery, then the earlier the surgery happens, the more likelihood there is that they will never have surgery again. If you look at surgery in teenagers, then generally 50 to 80% are gonna have surgery again. If you look at surgery in late thirties early forties, then less than 15 to 20% of patients have surgery again.
So it's the timing of the surgery that's really key because the endometriosis can come back. Right?
I think that's too simple. Yeah. That's correct, but I think it's too simple. Okay. That is correct. The earlier the earlier you don't wanna delay surgery hoping that you can do it later
And therefore have a higher success rate. I don't. I don't know that you can. I don't know if you can effectively do that because that means you're gonna have to tell somebody just to put up with that pain? I'm not sure that's a good answer. Putting up with pain is not a good answer.
Alright. Well, I really appreciate you making time for this and all the work that you've done and and how you're willing to make time to speak about it and the efforts, with the Endometriosis Foundation of America.
Disclaimer
The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.
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