Episode 2: Top 6 myths about endometriosis
Navigating endometriosis can feel overwhelming, especially with so much conflicting information out there.
In this episode, Dr Peta Wright and Sam Lindsay-German gently unpack the top misconceptions about this condition – offering clarity, comfort, and a path forward for those seeking understanding and support.
Listen to them explore six of the biggest myths about endometriosis – from misunderstood symptoms and causes to the range of treatment options available.
🎧 Listen now to find out:
🍃 Why endometriosis is not always synonymous with pain, progression, or an incurable condition, and learn how some women live symptom-free.
🍃 The range of treatment options beyond surgery and hormones, including lifestyle changes, diet, and ways to support your immune system and overall health.
🍃 Why an early diagnosis doesn’t necessarily mean better outcomes and how you can make informed, empowered decisions about your care.
If you’ve ever felt confused or overwhelmed by the information about endometriosis, this episode is here to help you find clarity and support.
Tune in and discover the truth behind the myths.
Resources Mentioned:
Healing Pelvic Pain by Dr Peta Wright – A comprehensive guide on managing pelvic pain and understanding the complexities of endometriosis.
I Conoy et al., ‘Pelvic Pain: What are the symptoms and predictors for surgery, endometriosis and endometriosis severity’, Australian and New Zealand Journal of obstetrics and gynaecology, vol. 61, no. 5, 2021, pp. 765-72.
A Meulders, ‘Fear in the context of pain: Lessons learned from 100 years of fear conditioning research’, Behaviour research and therapy, vol. 131, 2020.
GL Moseley and DS Butler, ‘Fifteen years of explaining pain: the past, present, and future’, The journal of pain, vol. 16, no. 9, 2015, pp. 807-13.
J Rawson, ‘Prevalence of endometriosis in asymptomatic women’, The Journal of Reproductive Medicine, vol. 36, no. 7, 1991, pp. 513-5.
“French guidelines” → https://pubmed.ncbi.nlm.nih.gov/29602692/ (original one published in 2018, review done in 2021)
JLH Hans Evers, ‘Is adolescent endometriosis a progressive disease that needs to be diagnosed and treated?’ Human reproduction (Oxford, England), vol. 28, no. 8, 2013.
RF Harrison and C Barry-Kinsella, ‘Efficacy of medroxyprogesterone treatment in infertile women with endometriosis: a prospective, randomized, placebo-controlled study’, Fertility and sterility, vol. 74, no. 1, 2000, pp. 24-30.
A Muraoka et al., ‘Fusobacterium infection facilitates the development of endometriosis through the phenotypic transition of endometrial fibroblasts’, Science Translational Medicine, vol. 15, no. 700, 2023, eadd1531.
M Leonardi et al., ‘Transvaginal ultrasound can accurately predict the American society of reproductive medicine stage of endometriosis assigned at laparoscopy’, Journal of minimally invasive gynecology, vol. 27, no. 7, 2020, pp. 1581-7.
T Indrielle-Kelly et al., ‘Diagnostic accuracy of ultrasound and MRI in the mapping of deep pelvic endometriosis using the International Deep Endometriosis Analysis (IDEA) consensus’, BioMed research international, vol. 2020, 2020.
J Abbott et al., ‘Laparoscopic excision of endometriosis: a randomized placebo-controlled trial’, Fertility and sterility, vol. 82, no. 4, pp. 878-84.
P Vercellini et al., ‘The effect of surgery for symptomatic endometriosis: the other side of the story’, Human reproductive update, vol. 15, no. 2, 2009, pp. 177-88.
J Jarrell et al., ‘Laparoscopy and reported pain among patients with endometriosis’, Journal of obstetrics and gynaecology Canada, vol. 27, no. 5, 2005, pp. 477-85.
AW Horne et al., ‘Surgical removal of superficial peritoneal endometriosis for manafing women with chronic pelvic pain: time to rethink?’, BJOG: an international journal of obstetrics and gynaecology, vol. 126, no. 12, 2019.
A Ryan et al., ‘Central sensitisation in pelvic pain: A cohort study’, Australian and New Zealand journal of obstetrics and gynaecology, vol. 62, no. 6, 2022, pp. 868-74.
AW Horne and SA Missmer, ‘Pathophysiology, diagnosis, and management of endometriosis’, BMJ (clinical research ed.), vol. 379, 2022.
Transcript of episode:
Ep2: The top 6 myths and misconceptions about endometriosis
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[00:01:00] Thank you for joining us for another episode. It's really great to be here. What are we talking about today?
Today we're going to talk about endometriosis. I often feel myself getting really frustrated about the fact that there's so much misinformation out there in the media about endometriosis and pelvic pain.
While it's been really great that there's been so much more awareness about, issues like pelvic pain. I feel like what there is out there at the moment actually can lead to more fear, more pain, potentially more unnecessary surgeries. So instead of getting frustrated about it secretly on the inside, I just thought that we would do an episode and talk about some of those widely held beliefs and myths so that we can get some better information out there.
Can you just tell me like If I've never heard of it before, what does it mean and what would it look like? When you're saying this, what do you mean by that? Yeah, [00:02:00] so endometriosis is the name that we give to cells that lie on the inside of the uterus, so the endometrium, and they're the cells that grow every month in response to estrogen, and they grow and make this nice thick lining that's in preparation for a baby to implant.
If our egg isn't fertilized towards the end of the cycle, our hormone levels fall, and And the lining is shedded. And so we have that period. And in almost 100 percent of women, some of that blood comes out of the fallopian tubes and lands inside the pelvis. And that's called retrograde menstruation, just menstruation going backwards into the tubes and then into the pelvis.
So that happens with virtually every woman who has a period. And the main theory of most endometriosis is thought to be that women are having an abnormal or a more inflammatory response.
I'll just interrupt this episode to say that we have a plumber in the next room and then maybe [00:03:00] some vibrating sounds, but we'll just continue on. A bit like our fallopian tube. That's right. So if you hear any kind of reverberations, please It's Jason the Plumber. Anyway, we'll continue. So, those cells land in the pelvis.
Now, if we have a healthy immune system, our immune system will clean those up. We think with endometriosis what happens is the immune system becomes dysfunctional and overreacts to those cells and there's an over inflammatory response. And there's some evidence that there can be genetic things that can make that more likely, but there may also be environmental things as well.
And then there are, and people will always often talk about this, but there are very, very rare cases where There might be endometriosis like found in men, for example, very incredibly rarely or endometriosis lesions found in other parts of the body. So there may be other mechanisms potentially due to like embryological development, but that's [00:04:00] very rare.
So in the main context of most people who have endometriosis, it's thought to be back bleeding and then over inflammation. But the body has the capacity to heal itself. So just like if we have a cut on our arm, we don't expect that that cut is going to stay the same forever, because we have an immune system.
If we look at the pelvis with a camera, We can see little dark spots, sometimes organs in the pelvis can be stuck together. So an ovary might be sort of stuck with that sticky inflammation to the sidewall of the pelvis or to the bowel or to the bladder. Sometimes there can be endometriosis in the ovary.
And so that looks like a big cyst and they're often called chocolate cysts because if you make a hole in them, they It looks like melted chocolate coming out, like old menstrual blood. So that's what it can look like. And it can range in severity from mild or superficial endometriosis, which is almost just like little freckles on the surface of [00:05:00] the pelvis to deep infiltrating endometriosis, which is deeper lesions that have roots like weeds.
And that tends to be the kind that potentially might have more pain, although. In studies, there hasn't been a correlation between extent of endometriosis and amount of pain. That's a really, that's a really big point. So just say that again. Yeah, there is no correlation between extent of disease and amount of pain.
So someone can have stage four, which is the worst endometriosis and have no pain. And someone can have no endometriosis and have severe pain. So the factors that are shown to be associated more with pain, uh, things like a more, um, nervous system or behavioral things like avoiding immobilizing fear, they actually show that that is correlated with higher degrees of pain.
So that's what endometriosis is. [00:06:00] So, Awesome. So we're going to do some myth busting. Yes, we are. Great. So you came up with. How many, did you come up with six? Six. Great and we're gonna. There are probably more but we'll start with six. We'll just start with six today. Okay that's good. So the first one is that endo is always painful, a debilitating, progressive and incurable.
Is that true? And that it's always the cause of pain. No it's not true. In fact it's, it's not the most common cause of period pain. If you had 10 women who had pelvic pain or period pain, 4 out of those 10 would have endometriosis found at a laparoscopy, but 6 don't. So there's a lot more going on with pain, which we'll probably get into in subsequent episodes.
So yeah, only 4 women with pelvic pain will have endometriosis. So number one, it's not the main cause of debilitating period pain. Is it always incurable and progressive? And debilitating. [00:07:00] I think when women are afraid of endometriosis or they've been diagnosed with endometriosis and they have this core belief, and I've googled this to see what women are actually, what they're actually seeing on the, on the internet and on socials and things.
And it will say endometriosis is an incurable debilitating disease that causes pain. And it's just, Actually not true for the vast majority of women, but we internalize that belief. Um, there is so much evidence with mind body medicine that that belief can become our reality. And that's why I think it's such a dangerous belief to hold.
And that's why talking about this is really important. So what is the evidence that it's not? always debilitating. Number one, there is a lot of evidence that many women have endometriosis lesions don't actually have any pain at all. There have been studies done on women who have keyhole surgery for another reason, like having their tubes tied.
And in some of those [00:08:00] studies in one in particular, up to 44 percent of women in that study had evidence of endometriosis lesions with no pain and no symptoms. So We can have endo and not have pain or have a disease. So I think that is so important and even in say some country's guidelines like the French guidelines when they're talking about endometriosis They'll say it is not always a pathological condition.
In fact, it may be representative of physiological changes Yeah Just with having a period, some of that blood coming back out through the, through the fallopian tubes, landing in the pelvis and then the immune system having to clear it up. And that, you know, I think as well as other people that that may be a part and parcel of maybe normal menstruation.
So, and you know, in my practice, I consistently see women who have even the most severe endometriosis on an ultrasound who have zero symptoms and no pain. And then it's always progressive. [00:09:00] That's the other thing. So I think people think, Oh, if I have it, yeah, if I don't do anything, if I don't do surgery or if I don't treat it with hormones, it's just going to get worse and worse.
And they think about it like this dark kind of entity that's growing in their pelvis. But what we know about the natural history of endometriosis, and again, studies on women's health have been sort of few and far between, but what we do know is that Most endometriosis actually doesn't get worse. It doesn't progress.
In fact, in several studies overall, it would seem that about 70 percent of endometriosis either stays the same or regresses. And in a really interesting study, they looked at, did a keyhole surgery. found endo did nothing in one group and put the other group on a progestin. So a synthetic progestin that's supposed to suppress the lining of the endometrium like the pill.
Yeah. And then they went back and looked in the pelvises of those women three [00:10:00] to six months later. And what was really interesting about it is they found that both groups I had a high proportion of women whose, whose lesions completely regressed. So in the progestin group, it was like 40 percent totally regressed, no more lesions.
Okay, but what's even more interesting is that in the group that had nothing, the placebo, They had 44 percent totally regressed. So this idea that the natural history is that it always gets worse is wrong. And then, you know, even in COVID times when they couldn't do surgery, they were doing things like ultrasound tracking to see if deep endometriosis lesions were getting worse or, or improving or staying the same.
So this is pretty recent data from Sydney. And they found that overall. 70 percent of those even deep lesions got better, stayed the same. So only 30 percent of cases can get worse. We don't know who those [00:11:00] 30 percent are going to be, but for the most part, it, for many women, it's not progressive. That's a really good myth busting.
So, yeah, and that's a really great statement to start on. The question that I had, which I was going to ask was, so when the body is responding in this way and creating the endometriosis, why, you know how the body is always doing something to protect us? It's always trying to help us. What is it trying to do?
It's trying to clear up those endometrial cells, but it's just overzealous. So the inflammation is just so strong. too much, if that makes sense. It's an over inflammatory response. It's kind of like an auto, it's not classified as an autoimmune disease, but in many ways, endometriosis behaves like an autoimmune disease.
And the way that sometimes you think about an autoimmune disease, it's, is the body attacking itself, which then leads you to feel like. My body is betraying me. Why is it doing this? But the other way to think about it is it's mounting this [00:12:00] immune response to try to protect you. It's, you know, in the presence of danger, you know, and while I would be very careful to say that no one causes their endometriosis, it's not a lifestyle disease, but we also know the immune system is incredibly related to our gut health and stress and environmental factors.
And I think this is a super interesting study just to mention when it comes to that idea of the immune system trying to protect you is that, and I know that this is a rat study, but I just think that it's really a cool one where they had rats with endometriosis. And in one group, they were placed in an environment of high stress. So cats and like fear, high fear, trying to mimic high stress, I guess, in human life. Just going to the office. Yeah, exactly. And living our lives of poor sleep and a thousand [00:13:00] million things to do and lots of online time and all of that. And then they had another group of rats with endometriosis that they'd given endometriosis to.
And they're in a nice enriched, stress-free environment. Lots of wheels to climb on and food and friends and things. And then what they did was they measured the pain behavior of the rats in each group. And they also measured the lesion size. And they found that in the group of rats who were in the highly stressed environment, their lesions actually grew.
They were heavier and larger and their pain behavior was worse. And in the other group, you know, it was the opposite. So, you know, there's a theory as well that there are these adrenaline kind of receptors on these cells and they can respond to stresses in our lives. And we know that stress affects our immune system.
So all of the things, and we'll talk about this in more episodes, but things that we can [00:14:00] do to help improve our immune systems. Thanks. We'll be able to improve or decrease that over inflammation. If we do have a tendency to have too much inflammation. Okay. In that really great, because I can see this is like something you're really passionate about and we know it is, and we know this is your thing.
And in that, when you were talking, you went over the number two myth, which was the period of pelvic pain is always due to endo. So not most people, you know, as we said, 40 percent of women with pelvic pain or period pain will have endo, 60 percent will not have endo. So there's other things going on.
Absolutely. Okay, we're going to move on to number three. The early diagnosis of endo improves outcomes. Yeah, this is a really important one because I think that there, with the awareness, so much more awareness of endo being the thing we don't want to miss. It's like the call to action there has been that early diagnosis of endometriosis is important somehow.[00:15:00]
And yet, we don't really have any evidence to suggest that early diagnosis of endometriosis with a surgery does improve outcomes. I would be really strong with this point to say that early treatment of pain and symptoms is extremely important in improving outcomes because we can help women to identify what's going on.
And I don't think we always need to have diagnosis with an operation of endometriosis surgery. To, to work that out and to develop a plan and to start treating, because a lot of the time, the best treatment is about education, about all of the things that can be going on. And then a lot of the simpler strategies that we'll talk about in subsequent episodes.
The other thing is that now we're at a time where in the past, surgical diagnosis was kind of like the only, way we could diagnose endometriosis. Um, and now we have much better quality ultrasound. And so I would say if we're [00:16:00] concerned getting a really good quality endometriosis scan, which has fairly good more than 95 percent sensitivity and picking up severe endometriosis like deep endometriosis or ovarian endometriosis, which are the kind that are the most likely to respond to surgery.
If it doesn't show anything, then you might have superficial endo, but we know that that's the kind of endo that can go away by itself and that we think is probably less severe. Um, and I think that's what's good at responding to surgery. And there are a couple of big studies actually in Europe at the moment, trying to answer that question, whether that's doing more harm than good.
Anecdotally in my practice, I would say that the earlier someone has a laparoscopy, the more laparoscopies they end up having. The more they get into this belief of this incurable, I've got this disease that is I'm powerless against that's incurable and debilitating, and that the only weapon that they have is more and more and more surgeries, which have fewer and fewer [00:17:00] returns.
And that's where I'm seeing women who've had, you know, their eight or 10 laparoscopies who are feeling like, well, if this is the gold standard of treatment, and it's failed me. for having me. I must be really broken. So I think if you're in that, I've got really bad pain. Do I need a diagnosis of endo? Is that the most important thing to look, I think, for?
I think what's really important is that your experience is validated and that you have a plan for treating your pain and your symptoms and that you understand. Stand all of the complexities around pain and all the things that contribute to that. The earlier you have that, the better your outcome will be.
And I don't think that necessarily includes an A laparoscopy. Mm-Hmm. And that's where you like to use pelvic pain. over endometriosis. Yes. So that what we're addressing is the pain. Yes, because there's such a poor correlation between pain and the presence of endometriosis. So if we're just fixated on the endo, we often don't get to the root of the pain, which probably leads us into [00:18:00] number four – that you always need surgery and it's the only way to treat, which you've kind of covered. But I would say about the efficacy of surgery and the things that I think are really important if you're considering surgery. So we know from, again, not many studies have been done on this, but what we know with randomized controlled trials, which is where you randomize people into two groups.
So one study, small numbers, and they gave one group of the people an operation where they put holes in their tummy. didn't remove the endo in another group, they did remove the endo, didn't tell them who was who. 30 percent of the placebo group, the one who didn't have the endo removed, had improvement of their pain, which I think is really important and speaks to that mind body connection and that feeling of, I'm being validated by this paradigm.
70 percent of the women who had the lesions removed had an improvement in their pain, but when you take the placebo group, The placebo effect into account, that's about a 40 percent [00:19:00] improvement, a real improvement. And out of that 40 percent of women who improved after surgery, about 50 percent of women would have ongoing recurrence of pain in the next five years.
And go back to have to have it again. Correct. And so got to maybe toss a coin one in two chance of having an improvement in your pain with surgery alone. And the other thing I would say as well, which is really important based on much more recent data is that there's this idea, and we'll talk about this in subsequent episodes of one of the other things that can contribute to more pain is something called pain system hypersensitivity, which is where pain in our bodies is just turned up, the volumes turned up.
Now, with women who have that, who have, um, a high, a moderate or high pain system hypersensitivity score, pretty much none of those women who went on to have surgery, um, have a high pain system hypersensitivity score. had an improvement. In fact, many of them were worse. So if you're contemplating surgery, I would say make [00:20:00] sure that your surgeon is doing that score with you.
It's called a central sensitization inventory, and it's just a group at 25 questions. And if your score is moderate or higher, which is I think 45 or higher, Then the relief that you're likely to get from surgery is likely to not be there at all. It's not to say that surgery isn't going to be part of your plan going forward.
But in that case, I would definitely be looking at nervous system, brain, muscle stuff before surgery, because it's likely to get worse. And that's another really important thing when we're looking at selecting the right people for surgery. Cause you only want to have surgery if it's going to improve your quality of life.
And there are so many women I see who. It hasn't improved their quality of life, it's made it worse. And I, I know you're talking about studies and I know talking about studies is important and we want to hear about that, but can you just talk about the people that you actually see? Because I know you and Thea spend so much time sitting with [00:21:00] people and like you say, validating what they're feeling and acknowledging what's happening for them.
So in your experience with your history of dealing with people in that way compared to how you might have done before, what do you see? Hardly any people just get better with surgery. Hardly anyone. And I think maybe in the way that I see patients, if you're, if you're really considering that holistic view of what is actually contributing to the pain, endo might be a component, but it's only, it's a small component and the other things need to be addressed.
And I find that just surgery barely helps unless you've purely just got period pain or deep lesion or something and you don't have any of the other things. But it's in my experience, much less likely to work. Again, I do the surgery, but I would do it in conjunction with other things. And so normally I would try.
Things like pelvic floor. Physio will do a whole episode on that pain education using sometimes hormones to reduce inflammation, using diet and supplements, [00:22:00] using medications to reduce inflammation. And then I find my approach now is I do that for three or four months. And I, of course, I do a good ultrasound as well, and I've found that probably less than 5 percent of women need to end up having surgery.
And so the other thing I would say is if people are thinking about this, well, what about fertility? Yes. How does this affect women who are thinking about having babies? So the other big myth with ENDO is that Endometriosis always causes infertility, and that's not true. We know that there is an association between endometriosis and infertility, but probably between 50 and 80 percent of women who we know have endo, and remember there's going to be a whole lot of people who don't know because they don't have symptoms, they don't have pain, don't have any issues with infertility.
So between 50 and 80 percent of women with endo don't have an issue with infertility. We know that I think a very recent stat that I had read from one of the fertility conferences was that when women are being [00:23:00] investigated for fertility and fertility workups, maybe 50 percent of them may have some endo found.
But when we think about with the tubal ligation study, And the women who didn't have any pain, also they were having their tubes tied, so they probably had babies. It was like a one in, almost one in two. So, is it that it's causing their infertility, or is it just what we're finding because we're looking in the pelvis?
So, I think, yes, there is an association, but the vast majority of women with endo do conceive fine. Doing surgery on someone, say if you're 19 and you've got pain and you're really worried, is it endo? Do I need to have a surgery because is doing a surgery going to help my fertility later on? There is no evidence that that's the case.
We do know that if you have been struggling to fall pregnant, so over 12 months or more, and you did have a laparoscopy and we removed some endo, it does seem to increase your fertility rate but only if you've already tried, if that makes sense. So doing an early laparoscopy to improve fertility when you [00:24:00] might not even have an issue with fertility, is a good idea.
And I think it's a really important question. Lots of people will have the final point that you've got on here is that hormones and surgery are the only effective treatments, but we've already kind of covered this, but maybe yeah, covered surgery, um, maybe a part of some people's plan. Um, hormones can be really effective way of reducing inflammation.
And we might do a whole episode actually on that. But some people don't want hormones and there are a lot of other ways we can help. So we can work on the immune system by dealing with gut health and that comes back to food, but it also comes back to our environment and our stress levels, because we know that that massively affects our microbiome.
How we metabolize hormones, our digestion, the wall of the gut, and then ultimately our immune system. And then looking at movement, pelvic floor muscles, and then addressing pain using anti inflammatory medications, supplements, [00:25:00] foods, and other things that can also affect pain hypersensitivity. I think the key is discussing it all and then having good understanding of it and making a map for the woman in front of you so that you get to choose your path.
You're in charge of your body and your journey and what feels right to you. Then, you know, your doctor should be there to guide you and help you with all of the options. So I've got some women who just get I use a really great anti inflammatory diet and some supplements and really work on their overall health and they don't do any of the other things.
I saw a woman at a fire dance the other day who's got the worst endometriosis you've ever seen and was dancing and just uses Chinese herbs and doesn't do anything else. And then I have people who hormones do make a difference for them or for whom surgery has helped in conjunction with everything else.
But I find that when people understand everything, they actually feel empowered because there's so much that is in their control. And what I'm hearing you say [00:26:00] that is that actually it's about listening to what the woman needs. Yes. As opposed to enforcing something onto the woman. the situation. It's about saying what's going to work best for her.
That's going to make her feel safe and seen and heard. Yes. And I wanted to say at this point, cause there'll be women who are listening to this going, well, when are the next podcast episode? But your book is a really great place to start if they haven't already read that to sort of actually. Understand some of these things you're talking about and the stories that you have in there are really helpful in supporting those women and knowing where to go.
Yes. Yeah. So that's called healing pelvic pain and it's available wherever. So that's a really good resource, but we will talk in this podcast series, even interview women who have experienced endometriosis and all the different ways of healing that there are available. Because the thing is, this isn't like endometriosis, a take home message.
It's not like something that is life threatening that you have to do. You don't have to just treat the lesion, it's treating it within your body, and treating you, treating the woman, [00:27:00] and that is the main important thing. We don't have to get worried or scared about that, we just have to treat what's actually going on in our own bodies, and understand that there are so many options.
Absolutely. That's really good. And finding someone like you or another doctor who they can actually relate to and feel comfortable to discuss these things with. Yeah, and not feel like you have to be railroaded into a certain treatment. So I would say, if there are more questions, and I think this is such a complicated, nuanced area and I could talk about this for ages.
If there are more questions, please reach out to us on our socials at verawellness.com.au and stay tuned and subscribe to the podcast, Women of the Well.
Thank you for having us. And we'll hopefully have lots more episodes to talk about all of this in the future.
DISCLAIMER:
This podcast is for information and educational purposes only and is not intended as a substitute for medical advice, diagnosis, or treatment.
