yall would rather believe apps like wayfair r trafficking children and women through dresser listings instead of paying attention to sex tourism or capitalism incentivizing the wealthy to exploit women in lower social classes, i get conspiracy can be “fun” but i promise u most of the sexual abuse and trafficking happening in the world is directly from ppl with power buying their way out of consequences and not people selling overly priced bed frames, saying this as a trafficking victim u look stupid as fuck parroting that stuff
the thing with wanting to "willo" a system in response to loneliness is that... a system cannot solve loneliness. it cannot meaningfully address the pain of it. on a surface level, it may seem that it is the perfect solution- friends in your head, right? but alters are parts of a whole- it will always still be "you." nothing new can be added to a brain; everything it needs- could need- is already physically there.
the solution is always community. to seek people out, to connect with them. "willing" a system puts the person in a position to engage with a community in order to do so. that community engagement, that is the solution to loneliness, and it is far too often attributed to the "willing" of alters instead.
which is a damn shame. its a community with less emphasis on connection than most.
also I don't think parents "these days" are uniquely terrible, I just think neglect is showing up in new ways as technology progresses. today's ipad kid would've been wandering around in a ditch alone all day and night before. parents not wanting to have to deal with children is not a new phenomenon.
I think parents these days are a lot BETTER. Because well intentioned parents used to fuckin whip their kids and now well intentioned parents help with emotional regulation.
“Please, may I whip your kids? Please, may I whip your kids? Please, let me whip your kids. Please, I wanna whip your kids. Please, let me whip your kids. Please, I wanna whip your kids.”
also I don't think parents "these days" are uniquely terrible, I just think neglect is showing up in new ways as technology progresses. today's ipad kid would've been wandering around in a ditch alone all day and night before. parents not wanting to have to deal with children is not a new phenomenon.
I think parents these days are a lot BETTER. Because well intentioned parents used to fuckin whip their kids and now well intentioned parents help with emotional regulation.
“Please, may I whip your kids? Please, may I whip your kids? Please, let me whip your kids. Please, I wanna whip your kids. Please, let me whip your kids. Please, I wanna whip your kids.”
"Femboys" are an often tough shell to crack. The structure of the "femboy" as an idea acts as a spiked shell, both "protecting" from outside intervention, and keeping the egg in. It's made to absorb transfeminitity in a transmisogynistic context, in such a way as to be comfortable enough to survive in, while being uncomfortable enough to not threaten the statu quo.
I think then that it is crucial to center the "femboy"'s wants, then, as they matter to the body and the world. To press on that discomfort to higlight the contradiction of the self. You want to gently highlight the things he could have, in ways that don't threaten his understanding of himself too much. It's hard and long work.
You can hardly get one to admit that they are or want to be a girl, and it is a foolish notion to press on this first. It is often easier, then, to circumvent the matter to better encircle the boy. Focus on steps of transition, social presentation, hrt. You can obtain often enough a boy that will do many of those and still proclaim boyhood. You can then push on the contradiction of their self, and on the pain that contradiction will cause. If you are close enough to them, you can introduce some transfeminist theory.
Femboys require tact to crack, sadly. They are the product of our society's transmisogyny, and as such are difficult subjects. Yet, do not bear the world on your shoulders. You need not take on more work than you can.
Yes, endometriosis is disabling. Life altering levels of disabling in more severe cases. Anyone that has it will tell you the same. But not only does this condition not get recognition as a disability in most places despite the ongoing, lifelong complications it causes; many also aren't aware that it exists in the first place.
So! I am here to change that, hopefully, for at least a handful of you! I plan on making more resources that specifically discuss writing endometriosis later on, but to do that you need to, like, know the condition. This post will be going over what endo is, what it isn't, and should hopefully serve as a good opener for understanding it on a surface level. We'll get into more specific applied writing advice later!
I can name exactly one character out of anything I've ever heard of that has endometriosis and the source was a book I've never read. I'd honestly love to see more characters with it!
Because there's hardly any existing representation, my reference material for writing endometriosis will be less on how current rep works/doesn't work and more on what endometriosis is. This series will also hopefully be helpful if you know or happen to meet someone who has endometriosis (which, considering how many people get it, is extremely likely)!
So What Even Is Endo Anyway
The average person with a uterus does not have severe pelvic pain during periods, and especially not outside of periods. Endometriosis Jeremy, who has 10,000 stabbing pains everywhere all the time every day, is an outlier and should not have been counted
Firstly: ANYONE that tells you that severe cramping or pain during (or ESPECIALLY outside) a menstrual cycle is normal or nothing to worry about is either MISINFORMED or a LIAR. FIRST of all. If you are passing out that is not normal. If you are throwing up that is not normal. If it is interfering with your ability to do basic tasks that is not normal. Yes, even if it's "always" like that! Even MORE so if it's always like that! There might be something underlying going on!!
We got that? Okay good great awesome. Now:
I need you to know first what endometrium is. Endometrium is the innermost lining of the uterus, it's what gets broken down during menstrual cycles, and this kind of tissue is inside of the uterus, and only inside of the uterus in an abled body. Right. Uterine lining. Now that we have that for reference!
Endometriosis is a disorder in which tissue that resembles endometrium (research is still ongoing on what exactly it is) grows and expands inside of the body, and outside of the uterus. It then behaves similarly to real endometrium, only having nowhere to go when it's supposed to be leaving the body, so it makes it your problem. Indefinitely.
"Wow, that sounds bizarre and painful" It Is! Enormously So! I'll explain in more detail below!
Going through this by answering commonly asked questions about endo, including in endo support groups and discussion threads. I see questions about what endometriosis is classified under, what it actually is (which is hard to answer) and what, if anything, can be done to slow it down, all the time: so I'm answering those first!
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Is it a cancerous disease?
No! The tissue can get anywhere in the body and may exhibit similar behavior (rapid growing and replication where it shouldn't be), but endometriosis is not a cancer in itself. The implants are benign.
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Is it an autoimmune disease?
It's ... complicated. Because it undeniably impacts the lymphatic system in a negative way. It is “characterized by immune system dysfunction,” (Zhang et al., 2023), it's just that the endometrium-like tissue is going after that system, not the immune system doing anything first.
But isn't an autoimmune condition. Endometriosis, being inflammatory, infects multiple body systems. It is not the immune system attacking a structure in the body, it's the other way around. It's a matter of, like, the order those things happen in if that makes sense?
Endo is also wildly under-researched, like, it's ridiculous. So if this turns out to be inaccurate later on I will update accordingly, BUT: as of the day this initially goes up, that is what we know about it.
We also know that the immune system is often exhausted in those with endometriosis:
“NK cells, which are important immune-system components (particularly in the innate immune response), play a protective role against tumor development and viral infection via cytolysis and immune regulatory capacity. NK cells also play important roles in numerous immune-related diseases.”
“NK cells are thought to play key roles in the pathogenesis of endometriosis by allowing or inhibiting the survival, implantation and proliferation of endometrial cells. (...) Additionally, NK cells may be involved in the development of clinical symptoms such as dysmenorrhea and pelvic discomfort (...).”
— “Immune and endocrine regulation in endometriosis: what we know” (Zhang et al., 2023)
The same cells that are seen having heavy involvement in immune diseases -- overactive or dysfunctional NK cells are believed to contribute to the pathogenesis of autoimmune diseases (Liu et al., 2021) -- are also overactive in endo. Not the same kind of disorder, but a very similar function and appearance.
We can also observe that these NK cells (and other related cells, like T cells) have altered composition and functions in patients with endometriosis in the same review:
“NK cells of patients with endometriosis often show increased expression of KIR receptors and decreased expression levels of granzyme B, perforin, TRAIL, and CD107a suggesting functional defects.”
“Concurrently, decreased expression levels of ULBP-2 and ULBP-3 on the membrane of NK cells in patients with endometriosis may help eutopic/ectopic endometrial cells to escape immune surveillance, and may participate in NKG2D-mediated decline of NK cell cytotoxicity. This cascade would impair a timely NK-cell mediated clearance of endometrium that is displaced into the pelvic cavity, promoting the progress of endometriosis.”
“Increasing evidence has shown that endometriosis is related to local and systemic T-cell dysfunction, and that immune mechanisms involving T cells may play important roles in the development of endometriosis.”
“Immune cells such as B cells, neutrophils, and mast cells also participate via various pathways in the development of endometriotic lesions, while cellular immune factors such as interleukins, interferon, and various chemokines play intermediary roles in the multiple cascades involved in the pathogenesis of endometriosis. B cells are important participants in congenital and adaptive immune responses. Polyclonal activation of B cells and anti-endometrial autoantibodies may play important roles in the pathogenesis of endometriosis. These findings indicate that interleukin, interferon, TGF, and other cytokines participate in the development of endometriosis by changing the activity of immune cells.”
— “Immune and endocrine regulation in endometriosis: what we know” (Zhang et al., 2023)
Research is still ongoing, but what all this means is that something about our cells differs, for one reason or another, in such a way that displaced tissue can just ... bypass things it isn't normally supposed to be able to.
Cellular immune factors in endometriosis are changing the way those cells in our body work. So on a technicality, no, endo is not considered autoimmune; but it is very, very similar to autoimmune disorders, and very, very comorbid with autoimmune complications.
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So is it just a menstrual disorder, then?
Endometriosis is labeled by many, many people -- including myself in the past, before my own condition started progressing -- as a reproductive disease or something that only impacts periods or your menstrual cycle. This is misinformation! Or, I should say, this is not all of the information! This definition is limiting a lot of things!
The typical symptoms you'll hear about are period pain, abnormally heavy menstrual bleeding, and pelvic pain. But there's a lot more that endometriosis could be causing on top of that!
It is a chronic inflammatory condition. The tissue that grows is progressive and, in a good amount of cases, will not stop unless removed. While the speed at which it progresses and the locations it spreads to vary a lot from person to person, two constants are “inflammation and scar tissue forming in the pelvic region and (rarely) elsewhere in the body,” according to the World Health Organization.
Hormonal complications and imbalances are also important to mention when discussing endometriosis. The tissue growing around in the pelvis and abdominal cavity, for one, responds to hormonal changes. It is known to bleed during menstruation.
The specifics, still, are ... not yet entirely understood.
We know that endometriosis is “estrogen-dependent” and that “abnormal progesterone expression and signaling can promote endometriosis” (Zhang et al., 2023).
In Zhang et al.'s same 2023 literature review, however, the researchers find “relatively few studies on the mechanisms of immune–endocrine regulation of endometriosis. Existing studies have mostly been focused on estrogen and progesterone. Very few relevant studies have examined the role of non-sex hormones (that are also regulated by the immune system) in endometriosis pathogenesis.”
Meaning: we don't know if it's only estrogen and progesterone that contribute to endometriosis progression. We understand estrogen's role in endometriosis but we don't know as much about the endocrine system, and we especially don't know how that connects to the lymphatic system. But we are aware of how “the immune and endocrine systems share mutual regulatory pathways and influence each other.”
Non-sex hormones or outside activity from the endocrine system could (not for CERTAIN, but it's a possibility) be playing into the dysfunction of immune cells in endometriosis, for example, or maybe these things play into one another. Maybe lymphatic system activity is screwing up something in the endocrine system. But we just don't have the research to make a conclusion like that yet. Or, really, any conclusions at all. We literally still don't know what the tissue that climbs all around in your body when you have endo even is yet.
So we know that there's ... correlations. But we don't know what's causing what, just that Something Bad Is Happening and So Is This Other Thing and Watch Out. It is SURE as hell not "just" a menstrual disorder!
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What are the symptoms?
Depends on what type you have! That and whether you only have endometriosis or something else alongside it, how long you've had endometriosis, whether it goes untreated, the list goes on.
But you will generally be hearing about severe menstrual pain and abnormal bleeding, cycle-related complications that are expected to remain in that time frame while you are actively having a period. What people often leave out is that you more than likely will start to have more problems if left untreated or if you have a particularly aggressive case, because endo is a progressive condition.
It gets worse over time, faster or slower, no matter what you do. The focus in healthcare is not on stopping it, but on slowing endometriosis down.
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Is there a cure?
No! Now, does that mean there's no treatment? Also no!
And that treatment may look like physical therapy, hormone regulation, dietary changes, surgery in some cases, recurring surgery if it keeps coming back, the list goes on. There's a lot you have to keep track of, but because every case of endo is so individual, it's really something you have to consult a health professional for. And finding what helps is a lot of trial and error.
(Example being: cutting out or decreasing intake of inflammatory foods, because different things will react accordingly to individual people. Someone could have absolutely no problems with soy or gluten, and no preexisting food intolerances, but now get absolutely fucked up by red meat. There are others where the opposite is true, especially if you have other conditions like celiac disease. Some people try low or no FODMAP diets and find it does not change their symptoms at all. It's something you have to be safe while doing, and different approaches do not work for everyone!)
(The same applies to different birth control methods! Some people can go on the pill or get the DEPO shot and be almost completely fine after, finding the regulation helps! It does absolutely nothing for me. Doesn't even put a dent in the pain. This can be influenced by other existing disorders!)
Treatment predominantly involves symptom management, but it never goes away entirely. It is a chronic, lifelong condition, that (as of medical advances right now) is something you live with forever.
There's also no way to prevent it! Fun!
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How many people experience endometriosis? And what's that actually like?
Among adults, a good 1 in 10 menstruating people will end up with this disorder! Wow! Up to 10% of an entire population and it's THIS underdiscussed? I know! I find it crazy, too! And skewed priorities for women's* health on top of that make it even worse!
What you might read in some (medical!) (otherwise completely reliable!) sources is that the worst and primary complication you can experience from endometriosis is potential infertility. That while it doesn't happen to everyone, it's still the only general thing we need to be concerned about if we're ever found to have endo.
This cannot be further from the truth.
There are many complications that can develop from untreated endo, especially if you have an aggressive case, and they are far more endangering to someone's wellbeing or even life. For the time being, here is a list (not all-inclusive, either) of the health problems that endometriosis can cause that aren't solely related to infertility:
– Endometriomas; a specific kind of cyst found on the ovaries
– Pelvic fibrosis/adhesions
– Other superficial lesions; refers to lesions that aren't deep infiltrating regardless of severity
– Deep infiltrating endometriosis (DIE); most often in the bowel or bladder or somewhere with close proximity to the pelvic organs
– Presence of endometrium-like tissue outside of the pelvis (reported cases in the lungs, can reach and wrap over kidneys, appendix, not as common but these things do happen)
– Pelvic floor dysfunction and any symptoms that can come with that (yes, ANY)
– Chronic fatigue
– Chronic pain outside of periods
– Gastrointestinal or urinary issues (may or may not be resulting from DIE)
– Nerve pain (severe lesions and spreading in pelvis, contact with the sciatic nerve, etc.)
– Mobility issues, especially issues with walking
– Binding/adherence of organs together via the fake endometrium (like ovaries to the uterus or to the other ovary or to the abdominal wall, or the bowel being stuck to the uterus being stuck to the)
– ^ "Frozen pelvis" is another name for certain instances of this adherence, particularly the uterus to the abdominal wall or the bowel
– Endometriosis also tends to correlate with other disabilities, which could partly be because of how many people have it, but feels important to note because some links are observed more often (ex: a lot of endometriosis patients also have issues with their thyroid)
(I will be talking about the types of endo, stages, and commonly comorbid disorders with endo in my next lengthy writing about it!)
Because of endometriosis being a progressive disorder by nature, you can and often will experience symptoms later that you did not have before. You can also have a consistent issue worsen over time to an unbearable degree that used to be tolerable, up to and including pain. I used to lift weights every weekday, for example, I could ride a bike no problem -- if I stand too long at a time now, my body punishes me by giving up entirely for the next five days. My pelvis hates existing and loves reminding me! Sad!
I don't say all of this to downplay the seriousness of infertility, either -- that is a perfectly reasonable thing to be concerned about! I would just Love if more top sources mentioned the fact that you could, like, die potentially from complications. That Feels Important To Mention.
What Did You Mean By "Schrodinger's Disability"?
Because endometriosis isn't seen as disabling, even in later stages. Not on its own. There is ongoing debate (mostly among people who don't have it, let's be clear) about whether endometriosis should be allowed to qualify for disability at all.
“SSDI and SSI endometriosis claims are systematically disadvantaged, particularly among those without access to care.” — Cromeens, PhD. et al.
These researchers conclude in their 2024 study published in Women's Health Journal, examining disability benefit cases related to endometriosis dating back to 2021, that disability income and any supplementary payments or support is extremely difficult for most with endo to receive. And this is in the United States alone. (If you'd like to read through the full study, I have it linked and highly recommend you do!)
And there are countless cases like this that go unreported or unexplored. Someone with complications from endometriosis finds it severely impacts their life → they lose their ability to hold down a job → they try to get disability benefits so they can survive independently → they are denied on the basis of it not being "serious enough", every time, no matter how bad it is.
People hear about it, assume it's the Bad Period Pain and I Can't Have Kids Disease, and look no further. And that's not just the fault of the individual; societally, that's how endometriosis is seen. It's a silent disorder, hard to diagnose and even harder to get taken seriously enough to get the diagnosis in the first place. These beliefs extend as far as the legal system. It actively hinders both our ability to get accommodations and be believed in needing them to begin with.
Some people will even try to argue that it isn't real. I could not begin to tell you why.
And on top of that, even IF you're taken seriously by a judge or a medical professional or anyone you'd need to believe you to get the help you need, endometriosis is notorious for being RIDICULOUSLY difficult to find!
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How is endometriosis diagnosed? And what happens after?
Endometriosis can only be reliably found via a laparoscopy. It is the only definitive way to diagnose it, though most people with it are very aware that they have it long before they get to that point because of how long we're left to handle it ourselves.
Firstly, it's very good at hiding. Both in its presentation and from typical diagnostic procedure.
“Endometriosis can often present symptoms that mimic other conditions and this may contribute to a diagnostic delay.” — World Endometriosis Foundation
A lot of us are misdiagnosed so many times before finally realizing or being informed that it's endo. Either by well-meaning doctors that might miss the underlying cause of these seemingly disconnected symptoms or by those that truly just could not care less about you.
It isn't the trial and error of diagnosis that's the inherent problem (that's just the way of medicine) as much as it is the dismissal with which these other labels are put on by many health professionals. There is a specific intent and the difference is clear to anyone that's experienced it.
Gastrointestinal issues? IBS, and nothing else even if you HAVE reported something else, and we don't have to do anything about it. Unexplained pelvic pain? You're just stressed, or you need better posture, or you need to lose weight; at MOST you'll be told it's a pulled muscle. Ovarian cysts? Everyone has ovarian cysts! Severe menstrual pain, unresponsive to normal medication and to the effect of vomiting and passing out? Everyone has period pain!!
It is maddening.
Even if you can get someone who will treat it seriously, it's not going to end there. You found a doctor that actually cares about your wellbeing! Yay! Now you have to catch the disease. And it is going to take a while.
"What about imaging? Shouldn't something like that pick up on, like, a CT or something!" Good question! Imaging is ... a theoretical diagnostic tool, for endo. Most of the time.
No matter the severity or prevalence of endometrium-like tissue in the body, it nearly never shows up on any scans at all. Your organs could be stuck together and the tissue won't show up on an ultrasound! At all! It mostly detects endometriomas, and even then it's not guaranteed. Personal experience in that: I've only ever got scans due to emergencies and they always came back clear, even when there was visibly something wrong on my body. Doctors (several) (many) have felt the presence of pelvic masses that shouldn't be where they are but then seen nothing on imaging.
The World Endometriosis Foundation tells us that “Ovarian cysts (endometrioma), adhesions, and deep nodular forms of endometriosis often require ultrasonography or magnetic resonance imaging (MRI) to detect,” and even then it's often missed. Go find literally any support group or forum space for endometriosis and try to count how many people you read who have severe endo that is completely invisible on everything except (sometimes) an MRI, and even then the technician has to be skilled to notice it for what it is.
This is nothing new and you do not only need to take my word for it. There are thousands and thousands of people that will tell you they were only diagnosed after life-threatening complications emerged, and for years, months or even weeks before, they were told all their scans came back "clear" and that they were "perfectly healthy" despite the chronic pain and every other reported symptom.
So there's something to know if you plan on writing the long, long diagnostic process of endo. Ultrasounds, CT scans, most MRIs, cannot rule it out. They can only rule it in. Moving on!
A lot of people will first experience endometriosis symptoms from at or before their first period, and these symptoms only worsen as time goes on. The waiting game between onset of endometriosis symptoms and any real treatment is very, very long.
It takes an average of seven to ten years for someone with endometriosis to receive the recognition and help that they need.
This is both because of how easily endo growths will hide from scans and anything short of surgery, which people reasonably won't want unless they have to get it, and because of medical misogyny. Many patients either aren't believed, are told the severe pain they feel daily is "normal", or don't treat the situation with urgency.
The dismissal from doctors is seen happening disproportionately to female patients, or anyone read as fem-presenting in some way. And in these cases there is textbook medical misogyny happening, and it leads to endo that could have been intercepted early getting so severe that suddenly you can't walk. Or you can't breathe because it turns out you're a rare case and it's reached your lungs. Or your appendix has to be removed because the tissue latched on, or an ovary has to be removed because the endo wrapped around it enough times or with enough pressure to kill it. Or it's gotten so bad you are literally coughing up blood.
This is happening all the time.
I am aware, fully, that not every person who has endometriosis is going to have these insane complications, but enough do that aren't discussed that that's where I want to put my focus. Mine used to be the textbook stuff you'd see with nothing else wrong ("just" heavy pain that'd trigger my reflex syncope and heavy bleeding), and now on bad days I need to use a chair to go anywhere that isn't right by my room.
All that to say PLEASE do not tell me I'm being "fear mongering" or whatever about a disorder that I have. Because I've seen that happen to other people and I personally will Not be tolerating it, I know what I'm talking about, Thank You.
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* Most sources on endometriosis refer to everyone with endo as women, assuming perisex cis womanhood with nothing "weird" or "unusual" going on outside of the endo. We know now this is not accurate -- the rates are lower in nonmenstruating people, but anyone can develop endo. Up to 10% of menstruating people and an unknown, but existing, number of people who don't, including previously considered perisex men (Rei et al., 2018).
I don't like calling it a solely gynecological condition for that reason: the category feels too specific. It affects multiple systems in the body, it can get outside the pelvis and you don't need a female reproductive system at all to end up with endometriosis. Implying otherwise is medical misinformation.
Anybody with a uterus is treated like they're crazy for being sick, then people without uteruses who have endometriosis are overlooked altogether, as it's assumed it isn't possible. “16 cases previously reported” before Rei et al. (2018) of men with endometriosis exist; as of now, it's considered rare, but it does happen. With how endometriosis can escalate, I believe it's dangerous to imply that somebody cannot possibly develop it, and it's always good to check if possible to be safe. The chances may be low, but they are not zero.
I plan on making a separate post one of these days about writing medical biases into your story and representing endometriosis with that bias in mind! Because it will be important, I'd argue inseparable from the experience. If you have endometriosis you're going to run into it. It will come up somewhere.
So What Should I Take Away From This?
That you'd likely write a character with endometriosis the way you would a character with a chronic illness already, depending on how severe the endometriosis is. And other factors, like where it is, what it's doing in the body, how difficult it'd be to get it out if that's necessary, etc.
Not somebody with just "slightly worse" bleeding every cycle: it is a chronic disability. Most cases don't start out severe but end up that way later; for most of us getting treatment is a waiting game. (And there's a lot of narrative potential in a character having a disorder that damaging that goes completely overlooked for WAY too long, but I'll save that discussion for another time.)
That's the takeaway I want you to have gained from reading: that first and foremost, endo is not a light condition to have. It is terrible. It is a lot more than the "my periods are marginally more painful than everybody else's" disorder that people like to pretend it is and should be reflected in your story accordingly!
I'll be going into different types of endometriosis and what sort of things may develop alongside it in my next post! You can expect that one in the next couple weeks. It's being put off right now because I have to go to the hospital tomorrow as of posting this (due to the aforementioned endo), but I'll get there as soon as I can!
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References:
– World Health Organization.
– Women's Health Journal (Cromeens, PhD. et al., 2024).
– World Endometriosis Foundation.
– Endometriosis Foundation of America.
– Journal of Endometriosis and Uterine Disorders (Zhang et al., 2023).
– Case Reports in Obstetrics and Gynecology (Rei et al., 2018).
– UCLA Health.
– Clinton Women's Healthcare.
– Annals of the New York Academy of Sciences (Sasson & Taylor, 2011).
– Frontiers in Immunology (Liu et al., 2021).
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Next: Types of Endometriosis and Comorbid Conditions →
I am ASSUMING you've read that first post I made already, because this one builds off of that. Last time we went into what endometriosis is and what it can look like at its most basic. Here, we'll be discussing some of the various more specific types, as well as other sorts of conditions known to co-occur with endometriosis.
Endometriosis is a situational thing to have; some people are asymptomatic regardless of severity, some have bad chronic pain and struggle with daily life, some have complications in other places in their body because it's gotten somewhere else ... if you have a character with endometriosis, they could have vastly different struggles depending on their circumstances.
SO! When you WRITE this character with this condition, it'd be wise to be very thorough in what exactly you want to portray! And because so many parts of this disorder can be contradictory (stage categorization, for example, can have NOTHING to do with pain), it's important to understand the different ways it can manifest regardless!
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So what, specifically, might my character be going through?
Glad you asked! Here, we'll be discussing some of the many (many) ways endometriosis will present, and the many more complications related, in some way, to endo.
[I will be including diagrams of the uterus and other anatomy to show the stages of endometriosis, and where endometriosis may show up in the body. I'd appreciate if they were not tagged as "gore" or "body horror" or anything along those lines. It's upsetting to see people warn in advance when talking about a condition I have. It is not obscene or horrific to be disabled.]
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How is endometriosis classified?
Weirdly!
As of 2020 there were FOUR classification systems used internationally, as said by Lee et al.: the rASRM, ENZIAN, EFI, and AAGL classification. And NONE of them accurately classified endometriosis progression on their own. We have no gold star standard yet for testing and documenting endometriosis.
I couldn't speak on how diagnostic criteria works outside of the rASRM, so if anyone has anything they'd like to add on, feel free! Where I live, this is how the disorder is classified -- and there are a lot of criticisms that come with it, but you're going to be seeing this system in your research so I need you to know what it means.
The revised American Society of Reproductive Medicine (rASRM) puts the progression of endometriosis into four stages. These stages -- minimum (1), mild (2), moderate (3), and severe (4) look something like this:
— Image source: NHS Leeds Teaching Hospitals.
There are some additional factors professionals need to keep in mind when diagnosing endometriosis: having endometriomas, for example, is an immediate stage 3 most of the time, and the obliteration of the pouch of Douglas (space between the uterus and the bowel/rectum) -- as in, the endometriotic tissue fills the space in that area -- is immediately grouped into stage 4 classification no matter what else or how little is found.
This is all because endometriosis doesn't always progress neatly from stage to stage. It is not necessarily linear in every person.
Additionally, pain levels are NOT correlated at ALL with the rASRM stages: you can have stage 1 and be in agony. You can have stage 4 and not notice anything wrong. You don't even have to have noticeable symptoms to have stage 4. I'd love to tell you why that is but I literally have no idea how that happens.
"What, is there NOTHING fully understood about this complex disorder, then?" Yeah Basically.
There's a lot of "this is happening but we don't really know why it does, we can guess though" going on with endometriosis. We are still having revelations about it as late as this year. This is why I can't give you all of the How It Works information that I really want you to have -- because I don't know. I know concretely what is going on, but we only have working theories as to why those things happen.
I will very likely need to update some of these sections in the future as we come to understand more about it. Until then, this is what we're working with.
Anyway.
The rASRM utilizes a "point" system, so to speak, when diagnosing endo. Having concrete numbers “allows for a way to numerically scale the disease and help determine classification,” according to the Endometriosis Foundation of America. The scale ranges from 1 to over 40, with anything under or at 15 considered more mild, and anything higher moderate to severe.
The stages are based on how many lesions are found as well as their depth; thus, the point system. You are counting how many implants there are.
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Stage 1: "Minimal"
Stage 1 endometriosis, at 1-5 points, is most often indicative of a few superficial implants. There are a very small amount.
Reminder: someone can be at stage 1 and still be in a lot of pain. Few people are also diagnosed at stage 1, even while they are in pain, because, as a progressive and ignored condition, many with endometriosis are not taken seriously until it gets much worse.
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Stage 2: "Mild"
Stage 2, at 6-15, has more endometriosis implants than stage 1, and those implants may or may not be deeper than in minimum endo.
Stage 2 is not inclusive of endometriomas. You may see a small cyst or something in this stage, but larger endometriomas are always indicative of an advanced stage. I've heard of people with endometriomas being labeled stage 2 here and there, but it's very uncommon where I am.
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Stage 3: "Moderate"
Stage 3 is diagnosed at anywhere from 16 to 40 points. That is a VERY large range of numbers and can cover a wider scope of experiences, so when writing moderate endometriosis (like at any point but especially this stage) you will have to be very particular with it. As moderate endometriosis has the largest room for variation, there will also be a higher variation in personal experience with it.
Typically, you're going to see numerous deeper implants in stage 3. "Filmy" adhesions may be present, as seen in the diagram above. (I've always described it more like "webs" but that's just so I can better wrap my head around it. You don't have to look at it that way.)
The presence of endometriomas is grounds for an immediate diagnosis of stage 3 regardless of the point system. Their size also does not matter; if you have one at all, stage 3, at least.
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Stage 4: "Severe"
Stage 4 endometriosis, severe, is diagnosed at anywhere over 40 points. Anywhere. Deep implants, denser and more prominent adhesions, potentially larger endometriomas, it's a mess. Implants in some places (again, like the pouch of Douglas) is immediate grounds for a stage 4 label.
Up to “57% of people with stage 4 endometriosis had an obliterated cul-de-sac” in one study on severe endo, according to Bence OTR/L (2025).
In stage 4 you will often see those adhesions trying to pull organs together. You see this in the diagram and in this visual as well (not necessarily stage 4 specific, just showing where endometriosis can, and most often (in severe cases), will go):
— Image source: NHS Leeds Teaching Hospitals.
All those spaces in between organs are grounds for endometriosis to implant itself. In stage 4, you'll see the highest amount of endometriotic tissue in these spaces, and in the most places -- where stage 1 may only have it, say, on a fallopian tube, stage 4 could indicate presence on the tubes and on top of the uterus and on other pelvic organs.
This stage also typically observes the most severe complications.
“The term, “frozen pelvis” is not an official medical term, but an unofficial condition meaning that the organs of the pelvis are densely adhered to each other due to deeply infiltrating endometriosis; and these organs, typically, are the rectum, bladder and ureters, uterus, and even large and small bowel.”
“The tubes and ovaries and ligaments of the pelvis may be involved as well.”
— Advanced Endometriosis Center.
"Frozen pelvis" is a co-occuring phenomenon with endometriosis wherein the lesions are sticking structures in the pelvic cavity together, such as the uterus to the rectum and/or the bladder, and this occurrence does not happen if you don't have deeply infiltrating endometriosis.
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None of these necessarily account for what happens when the endometrium-like tissue is found on other organs or gets out of the pelvic floor -- most of the time this is happening at a higher stage.
The Endometriosis Foundation of America proposes categorizing the disability in a different way: through where in the body it is. This would account for that oversight.
Such stage categorization would go as follows:
– Category 1: Peritoneal endometriosis - endo established in the membrane lining of the abdomen, the peritoneum.
– Category 2: Ovarian endometriomas - endo established in one or both ovaries.
– Category 3: Deep infiltrating endometriosis 1 (DIE 1) - first instances of DIE in the pelvic cavity.
– Category 4: Deep infiltrating endometriosis 2 (DIE 2) - escalated DIE IN the pelvic cavity and presence of DIE OUTSIDE of the pelvic cavity (ex: the lungs or heart).
– Category 5 - Involves those “with diffuse endometriosis, involvement in multiple locations or organs, and severe adhesions”; unofficial diagnosis.
Five specific and more applicable categories. Like a hurricane!
A revised score of over 70 has been proposed to include a potential stage 5 (Endometriosis Foundation of America), and this scale is used most often in surgical contexts, because endometriosis complexity informs difficulty of surgery (Zanelotti and DeCherney, 2018).
But most sources you find summarizing endometriosis are only going to include the widely known stages 1 through 4, so keep that in mind as well. There is proposal for inclusion of a stage 5, but we don't see it very often. Does not mean the categorization doesn't exist anywhere, just that it isn't as talked about.
(And, while rare, this all does not encapsulate the experiences of people who may have endometriosis that don't have ovaries or any of these organs. I still find it important to take these cases into account -- because of how diagnosis and stages are structured, there may be more instances of this than we think.)
Now that we have how endometriosis presents in its most basic elements down, we can get into some of the more specific ways endometriosis develops. Of Which There Are Many.
Types of Endometriosis
There are three general types of endometriosis -- that is, three types of endometriotic tissue:
– Deeply infiltrative (DIE): deeper lesions, in or outside the pelvic cavity.
This is all in the context of typical, pelvic endometriosis. Extrapelvic endometriosis is where endo is found outside of the pelvic cavity, and there are hundreds of places it can be found.
As I cannot cover ALL of them, I'm going to be going over both more common locations of endometriosis (ex: ovarian) and the ones I know the most about (ex: sciatic)!
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Ovarian Endometriosis
Endometriosis affecting the ovaries is where you see endometriomas. More commonly known as "chocolate cysts" (name I personally hate but it IS easier to say!), endometriomas are immediate grounds for a more severe endometriosis stage diagnosis.
Why is that? They “develop deep within the ovaries and are filled with old blood and endometrial-like tissue” -- that is to say, they form inside the ovary.
It can look like this:
— Image source: Endometriosis Foundation (charity number 1178525, since there are a lot of endometriosis research groups with extremely similar names).
They can also be on top of or outside and connecting to the ovary, but them forming from within happens as well.
They grow larger than ovarian cysts and the wall will have more scar tissue. They may appear denser and the coloration is different than other cysts -- they may show up as a deep brown, hence the Horrible Name I Don't Like That Unfortunately Makes A Lot Of Sense.
On top of typical endometriosis symptoms, endometriomas bring additional pains with them, like the ovaries positioning abnormally close together, hard to place pelvic or lower back pain, and other reported sensations like dull aches in those areas or "itching" from the inside of the body.
Reported symptoms like sudden extreme abdominal or pelvic pain on one side, nausea/vomiting, lightheadedness/fainting or even fever can indicate a ruptured endometrioma, which requires emergency medical attention in many cases.
Endometriomas, at least, are typically more likely to show up on scans than other endometriotic tissue, depending on the size and placement.
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Bladder Endometriosis
The urinary system is made up of the bladder, urethra, and ureters leading up into the kidneys. In bladder endometriosis, expectedly, endometriotic implants are found, either superficially or deep, on or in these structures (ex: on the lower ureter in the pelvic area, infiltrated endo inside the bladder wall).
Because of the positioning of the urinary system in the body, bladder endometriosis is more common than, say, endometriosis in the heart or brain (though those have also been documented). The kidneys tend to be exempt from this; it definitely can reach, but they're higher up above the pelvis than the rest of the system, so it's harder for lesions to get there.
— Image source: Endometriosis Foundation (1178525).
Signs of bladder (or urinary tract) endometriosis can include: pain while urinating or with a full bladder, loin pain (aches and pains in lower back/kidney area) which may or may not happen after urinating, inability to fully empty the bladder, passing blood in urine.
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Gastrointestinal Endometriosis
Gastrointestinal (GI) or bowel endometriosis is where endometriotic tissue is found in (for the most part) the lower abdominal structures like the bowel wall, rectum and lower intestine:
— Image source: Endometriosis Foundation (1178525).
Structures close to the gastrointestinal tract but aren't necessarily the bowel, like the appendix, are also at risk for implants attaching onto them in GI endometriosis.
Similar signs and difficulties that you'd see in urinary endometriosis also take place in this type: aches and pains in the abdominal area, inability to fully empty the bowel, and passing blood during a bowel movement.
Please everybody promise me that if you are bleeding anywhere you're not supposed to you'll see someone for it.
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Thoracic Endometriosis
So when I said coughing up blood could be a sign of endometriosis last time I was being DEAD serious.
Thoracic endometriosis, also known as lung/chest endometriosis, is -- you guessed it! -- endo found in the chest cavity! Like the rest of the types I listed, the lesions can be superficial or deeply infiltrating.
You are most likely to experience thoracic endometriosis in it latching onto the diaphragm. It can also reach other structures (ex: the lungs).
— Image source: Endometriosis Foundation (1178525).
This type of endometriosis can be particularly impactful. You can have bleeding into the space holding the lungs, or other air/fluid buildup, anything up to lung collapse. Not exaggerating at all, either, this can just happen.
(Most of the complications that arrive in cases like thoracic endo do so because the endometriosis is missed when this high in the body -- which is because a lot of references on endo write it off like it only impacts the pelvic organs. Extrapelvic endo may not be as common a condition, but it is very possible to develop, and if this were better understood, having extrapelvic endo may not come with quite as many risks. After all, it's a lot easier to manage a condition you're aware you have -- and the reason that endo gets as crazy as it does is because the warning signs go ignored!)
Those with endometriosis on the lungs or diaphragm may also experience respiratory complications like difficulty breathing. Pain in chest, right shoulder tip pain, and coughing up blood during menstruation in severe cases is related to thoracic endometriosis.
Please everybody promise me that if you are coughing up blood you'll see someone for it.
(Similarly: some people with endo get nosebleeds in relation to their cycle! You really do get to just bleed wherever, it's great (LYING))
Anything in the chest cavity, not just the respiratory system, is at higher risk if you already have specifically thoracic endo. Thankfully, diagnostic surgery is meant to be thorough, and can pick up on these implants if they do manage to get that high up.
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There are also a lot of rarer types of endometriosis that you really wouldn't expect to hear about. They're not typical, but they definitely exist!
A lot of people may get their appendix removed once endometriotic tissue gets on them, and while it wouldn't be the same as bladder endometriosis, it can still reach the kidneys. Umbilical endo, while uncommon, is also a repeatedly documented phenomenon. Endometriosis in the cardiovascular system, in the brain (cerebral) -- ocular endometriosis exists. As far as we can tell, it can get anywhere in the body.
(Many of the extrapelvic presentations of endo are very uncommon, but not nonexistent. The fact that it happens at all is why I'm so adamant on saying that this disorder is not solely gynecological. It predominantly affects the pelvic organs, but NOTHING is stopping it from going somewhere else.)
I'll only be going over one more example for now -- it is considered rarer, but I understand it more personally.
Sciatic Endometriosis
This form of endometriosis is considered more rare, but in cases of sciatic endometriosis, the implants have found their way to the sciatic nerve and are pinching or compressing said nerve.
The sciatic nerve is the nerve that goes all the way down into your leg through your hip:
— Image source: Seckin Endometriosis Center.
“(...) the body’s largest nerve, connecting the spinal cord with the legs and feet. It runs from each side of the lower spine into the back of the thigh and down to the foot.” — Seckin Endometriosis Center
In sciatic endometriosis cases, the implants skitter around in the pelvic cavity like they love doing, get on that nerve and place pressure. And it hurts! It hurts like hell! Symptoms can include anything typical of sciatica (nerve pain, difficulty walking, weakness and/or numbness in leg(s), foot drop) on top of endometriosis symptoms. It can affect one or both legs; sciatica that influences both limbs is called bilateral sciatica.
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Different Individual Impacts -- But Still Disabling
Many people with advanced endometriosis end up with altered reflexes and changes in mobility (as in your walking speed, posture, the way you take steps is going to look different) -- some use mobility aids (a lot of people use canes, but some need crutches or walkers or wheelchairs, etc. during flares or altogether) and other aids like shower chairs to make daily living easier. Other complications can arise aside from mobility issues that can impact someone's livelihood -- pelvic floor issues, to give one example, or chronic migraines.
Some people find they're able to get by with hormonal medications, birth control or pain medicine. Others cannot hold employment. The individual experience is always going to look a little different from person to person. And while we all have different ways of adapting, sometimes having endometriosis does impact the way you live your life in the same way any other condition with chronic pain would.
In my case: I can't work right now. I'm pursuing my degree completely online, and the vast majority of the time I am only leaving the house to see a doctor. I've been in emergency rooms the last two years more than I've visited people or went anywhere else.
We don't know the correlation yet as of the day this goes out, I can only guess until I'm formally seen (which is looking like eventual surgery) (nightmare), but I have endometriosis and bilateral sciatica, and they've actively gotten worse alongside each other. It is very likely that there is endo tissue of some kind compressing my nerve. These things have completely taken away my ability to do high-impact things, and I don't move around at all without experiencing some level of pain. Like, ever. Does not happen.
This was not a problem a couple years ago; progression can be very slow or very quick. Mine progressed rapidly; the time between me first suspecting that I needed to see a doctor and experiencing daily chronic pain and dysfunction was two years.
But there were signs before that! The moment I'd started having periods I had endometriosis symptoms. And I first noticed something "off" with my legs at sixteen, but the weakness and pain was cyclical and fleeting, so I brushed it off as overexertion -- sciatica is said to resolve itself in a matter of weeks if nothing is underlying. Mine is now constant. Never would've expected these things to be connected, but they can be!
I have unending nerve pain and a constant weakness in the legs. I feel pressure from the hips down that never goes away. My posture has changed. The way I move is different. Moving around, standing up, sitting or laying down, all hurt. Something is always wrong and it is Very Very Annoying.
All that to say: endometriosis can progress very steadily, and it can look extremely obvious in hindsight -- but it's also very quiet. Invisible to everyone, up to and (sometimes) including the person with it.
This is why I emphasize so much that it is a progressive, multiple body system disease, and it is extremely painful for a lot of people. It goes so unmentioned but it happens so often.
Not the case for everyone, again, for sure! You are not 100% guaranteed to get a severe or aggressive case of endometriosis if you have the disorder, just like you're also not guaranteed to have complications. It will not always get this bad.
But I still want to shed light these experiences because I know not doing so causes accidental misinformation to spread -- disabling endometriosis is so under-discussed. I want to give more attention to what these things can turn into because it happened to me in real time. If I'd known more about what it could do to someone before, I might have been able to intervene early. It happens to a lot of people (which would also be realistic to include in a story about it: brushing symptoms off or not noticing until it's too late for early treatment).
Even people that have it will fall into this rhetoric, sometimes! Some people with endometriosis can have zero endo pain, or be asymptomatic, and then claim that that's the case for every person with endometriosis. And that it's not disabling and "shouldn't count" as such.
Not even close to the truth. I don't care if they also have it they are wrong.
If I have to hear the "but I'M fine!!" from somebody one more time I will Throw The Chair At Them that I have to use sometimes to be able to get places in the house. Tell that to my completely dysfunctional pelvic floor, maybe it'll start doing what it's supposed to now since my disability Doesn't Count To Some People.
(Additionally: It is not "alarmist" or exaggerative for someone with a disability to say that it's a disability, and describe how it is. It is ableist to insinuate that, actually! I'm tired of hearing it! Stop saying that! I don't want to hear about how scared YOU are of MY chronic condition!)
REMEMBER this: just because ONE person is unscathed doesn't mean somebody ELSE is! Some people get endometriosis, again, and have no symptoms until they're much older, or even at all -- I am twenty years old and cannot walk right. Case by case basis!
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Speaking of dysfunction: here are a lot of things that can coexist alongside endometriosis. We're not done. God forbid. I have a lot more to say bad news
Comorbid Conditions
Having endometriosis is known to raise a person's risk of complications related to other conditions and disabilities. There are so many studies on this sort of thing -- the numbers may vary from research paper to research paper depending on the dates published and the like, but what you'll find every time is one common link:
There is an observed relationship between endometriosis, severe or further progressed endometriosis in particular, and multiple disability. That is: when someone has endo, they may be more likely to end up with more conditions because of complications -- and when that isn't the case, those with endo who are multiply disabled find that existing conditions can and will often make each other worse.
The NICHD summarizes the findings of researchers Sinaii et al.: “[those] who have endometriosis are more likely than [others] to have disorders in which the immune system attacks the body's own tissues,” and that there is notably “a strong association between endometriosis and autoimmune disorders, chronic fatigue syndrome and fibromyalgia.”
These findings, as early as 2002, still hold up. Current research on endo comorbidity supports all of these connections. It is impossible to discuss severe endometriosis without also discussing what other conditions a person is at risk for by way of having it.
This study by Khan et al., published as early as August 2025, mere weeks ago, using the electronic health records of over 43,000 patients, finds hundreds -- hundreds -- of conditions “significantly associated with endometriosis.”
Some, obviously, with much greater association than others -- but that's a high number! And with no one demographic of people being more or less likely to develop endometriosis, those correlations are solidified even more.
“Many of the observed associations between endometriosis and its comorbidities, such as chronic pain conditions and gastrointestinal diseases, are consistent with the established literature.”
“For example, a recent genome-wide association study identified shared genetic loci between endometriosis and migraines, suggesting overlapping neuroinflammatory pathways. Similarly, recent Mendelian randomization studies support relationships between endometriosis and gastrointestinal conditions, including gastroesophageal reflux disease and irritable bowel syndrome.”
“A genetic overlap between endometriosis and asthma has also been reported, with enrichment in hormonal and immune-related pathways.”
“We find hundreds of conditions significantly associated with endometriosis, including genitourinary disorders, neoplasms, and autoimmune diseases, with strong replication across datasets. Clustering analyses identify patient subpopulations with distinct comorbidity patterns, including psychiatric and autoimmune conditions.”
— “Comorbidity analysis and clustering of endometriosis patients using electronic health records” (Khan et al., 2025).
I literally could not cover all of them here if I tried. Gastrointestinal issues, for example, I couldn't fit in even though I wanted to discuss them. Because those are SUPER common!
(Could not recommend reading through all the links I'm sharing ENOUGH if you have the time to do so. There is also a lot of very new information coming out about this disorder and it never hurts to stay informed. I learned some new things about it just doing the research for this!)
But I WILL be covering several. Which is what the rest of this post is about. All comorbidity and then we're done!
Endometriosis occurs alongside autoimmune diseases a lot, and furthermore, it is known for triggering “local and systemic inflammation” via the lesions -- thus, it is also a risk factor for inflammatory complications (Blanco et al., 2025).
As we read last post, immune system dysfunction occurs in relation to endometriotic cells. And as recent research suggests, there are correlations here between autoimmune problems and severe endometriosis in particular.
Remember that endo itself is not autoimmune, as far as current research is aware. It's the endo that attacks the system and not the system doing the attacking. Still: there is something to be said about just how frequently observed this connection is!
Take Shigesi et al.'s 2019 study, where their findings indicate that there is “quantified [...] association between endometriosis and several autoimmune diseases, including systemic lupus erythematosus (SLE), Sjögren's syndrome (SS), rheumatoid arthritis (RA), autoimmune thyroid disorder, coeliac disease (CLD), multiple sclerosis (MS), inflammatory bowel disease (IBD), and Addison's disease.”
Of the 26 studies run, “5 (...) could provide high-quality evidence, and among these, 4 supported a statistically significant association between endometriosis and at least 1 autoimmune disease: SLE, SS, RA, CLD, MS, or IBD” -- which the researchers acknowledge isn't a lot, 5 of 26 is roughly a fifth -- but there is still something here.
And there is a lot of scientific literature about comorbid endometriosis and autoimmune diseases!
“In the case group, five patients were affected by IBD, while the disease was not observed in the control group (p = .07).” The case group, here, meaning those with endometriosis. “SLE was found in eight patients in the case group, while only one was found in the control group (p = .01). Fifteen women in the case group were affected by CD, while the disease was present only in one woman in the control group (p<.0001).”
— “High prevalence of autoimmune diseases in women with endometriosis: a case-control study” (Porpora et al., 2020).
(There were also significant findings in regards to endometriosis and autoimmune thyroiditis, but that will come up later.)
“Hypothyroidism, fibromyalgia, chronic fatigue syndrome, autoimmune diseases, allergies and asthma are all significantly more common in women with endometriosis than in women in the general USA population.”
— “High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis” (Sinaii et al., 2002).
(Fibromyalgia is also mentioned in its own section.)
“Several studies have reported a high prevalence of autoimmune diseases such as systemic lupus erythematosus (SLE) in endometriosis patients.”
“The results of this study showed higher positivity of ANA and greater arthralgia and asthenia in patients with DE compared with Non-DE patients and healthy controls, suggesting that they may have a higher susceptibility to autoimmune diseases and present more generalized pain.”
— “Serological autoimmune profile of systemic lupus erythematosus in deep and non-deep endometriosis patients” (Coloma et al., 2023).
And all the other resources you can find about endometriosis and autoimmunity. There Are A Lot Of Reports. I could not reasonably list everything I found, it'd be way too long, but there's a LOT happening here.
The exact correlation is not 100% understood yet, but we do know that it's there.
We also know that there are differences in immune system activity and cellular makeup in endometriosis patients in ways resembling autoimmune dysfunction: the same overactivity or imbalance in immune system cells that you see in many autoimmune disorders, you will also find in endometriosis. (Ex: altered composition in NK and T cells and related receptors.) They share characteristics and present similarly. Not sure why yet, they just do!
And we also know that there is a relationship between how your endometriosis presents and what else you might be at risk for. This will be stated multiple times here. The correlations between endo and other conditions happen most frequently in advanced stages of endo.
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Thyroid Disorders
Examples: Grave's disease, Hashimoto's thyroiditis (Hashimoto's disease), other cases of hyperthyroidism or hypothyroidism.
Hashimoto's thyroiditis is especially noted: “Diagnoses of Hashimoto thyroiditis were significantly more frequent in women with rather than without endometriosis (14/45 [31.1%] vs. 27/181 [14.9%]” (Korošec et al., 2024). And in other studies, Korošec et al. report, if someone had “thyroid autoimmunity, endometriosis was more prevalent − 25% versus 14% and 44% versus 9% respectively – than in controls.”
These results were statistically significant; people with endometriosis were around twice as likely (31% to 14%) to have a diagnosis of Hashimoto's disease than people who don't have it. There are noted “higher rates of Hashimoto thyroiditis and higher TSH levels,” even if the reason the correlation exists is not yet 100% clear.
There is also a noted correlation between endometriosis and Grave's disease: “After adjustment for age and sampling year, we observed that Graves disease was associated with endometriosis (odds ratio [OR]: 2.52; 95% confidence interval [CI]: 1.30, 4.88; P < 0.01)” (Yuk MD et al., 2016).
Yuk MD et al. also speculate the potential cause:
“One of these potential links between Graves disease and endometriosis is autoimmunity. Endometriosis shares many characteristics with autoimmune diseases, including polyclonal B cell activation, abnormal functions of T and B cells, and inflammatory tissue damage.”
They also mention estrogen as a possible link: “Endometriosis is an established estrogen-dependent disease. Estrogen also plays a role in the pathogenesis of Graves disease by modulating the autoimmune response.” (Keep that in mind, too: modulating the autoimmune response. Thyroid dysfunction often is autoimmune in nature.)
(Neither of these are confirmed yet to my knowledge, but there being multiple potential reasons for the association is good to know!)
While this study found no correlations involving other thyroid disorders outside of Grave's, many others do. Researchers keep individually finding links between endometriosis and some kind of issue involving the thyroid.
The 2002 study by Sinaii et al. states that, in contrast to the U.S. population without endometriosis, people with it in the studied sample “had higher rates of hypothyroidism (9.6 versus 1.5%).” This is roughly six times the amount of hypothyroidism cases than those not co-occurring with endometriosis. That is a very high statistic, and while the research is old, we know that this result did not happen through random chance.
In Porpora et al.'s 2020 research, they find “A significant correlation (...) between endometriosis and autoimmune thyroiditis: 80 patients with endometriosis had thyroid diseases versus 14 patients in the control group.”
Again, very high gap here: 80 of the 94 people in this group are around 85%, and the remaining 14 would be 15%. That puts the sample of endometriosis patients with thyroid disease at 5.6 times the amount of people without thyroid disease. The rough 6% higher statistic is backed again and again.
Studies involving some correlation between thyroid disorders and endometriosis are plenty. There is a long standing association, though only in the last several years have we gotten closer to understanding why that association is.
In a 2019 study by Peyneau et al., it's found that “thyroid hormone metabolism is altered in endometriotic cells,” implying influence from a dysfunctional thyroid on endometriotic cells. More specifically: “As endometriotic implants were bigger in the hyperthyroid condition, smaller in hypothyroid (...), and slightly smaller in thyroid autoimmunity with euthyroidism, we concluded that thyroid hormones (...) may participate in endometriosis lesion growth.”
It's also frequently mentioned that thyroid condition may be impacting endometriosis symptoms and pain, or may be more likely to develop in severe endometriosis cases. While this specific study found no linear relationships, those in the study with endometriosis who did have a thyroid disorder “displayed significantly more chronic pelvic pain.”
“(...) the American Society for Reproductive Medicine severity score was higher in patients with thyroid disorders” and “(...) there was a trend toward a higher number of deep infiltrating lesions in patients with thyroid disorders.”
— “Role of thyroid dysimmunity and thyroid hormones in endometriosis” (Peyneau et al., 2019).
Endometriosis on its own has association with thyroid disorders -- but severe endometriosis with DIE presents in this way more often. This was also observed in autoimmune studies, like in lupus, where those with deep endometriosis were more likely to have it. This is worth taking note of.
Again, as endometriosis has long been critically underresearched, more still needs to be done to understand exactly what is happening here. But it's undeniable, just like autoimmune disease correlation, that something is.
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Chronic Fatigue Syndrome
Fatigue is a common symptom of endometriosis. And the frequency and intensity of that fatigue parallels chronic fatigue syndrome.
Endometriosis is also a noted comorbidity in chronic fatigue syndrome. In Boneva et al.'s cross-sectional study (2019), “more than a third of women with CFS reported endometriosis as a comorbid condition,” and comorbidity was already recognized before the study.
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Fibromyalgia
I have been researching comorbidity in endometriosis extensively to be sure I have this information as accurate as I can make it. And let me tell you. Fibromyalgia was coming up ... a lot.
“(...) Fibromyalgia may be more prevalent among women with severe endometriosis,” and a 2019 study finds that “estimated prevalence of fibromyalgia was higher among women with DIE” (Coloma et al.).
“For endometriosis patients the IRR [incidence rate ratio] for fibromyalgia was 2.83 (95% CI: 1.96-4.08),” alongside other data indicating that “RA, endometriosis and IBD are all risk factors for later fibromyalgia and CWP, consistent with a hypothesis of central sensitization as an effect of a painful underlying condition” (Larrosa Pardo et al., 2019).
“In particular, co-occurrence will be examined in: visceral pain (especially ischemic heart disease, irritable bowel syndrome, dysmenorrhea/endometriosis and urinary pain), fibromyalgia, musculoskeletal pain and headache,” as found by Affaitati et al. (2020).
They continue, “The pathophysiology of these pain associations is complex and probably multifactorial; among the possible processes underlying the mutual influence of symptoms recorded in the associations is modulation of central sensitization phenomena by nociceptive inputs from one or the other condition.”
And most of the studies I linked above in this post examining endometriosis and comorbid disabilities include fibromyalgia somewhere. In some places they say fibromyalgia directly, in others they say "multi-site chronic pain" in implicit reference to (or inclusive of) fibromyalgia. But it's, like, everywhere. It is noted all the time to have prevalence in people with endometriosis.
Like I said: it came up a lot.
The central sensitization hypothesis is a common theory for why fibromyalgia and endometriosis happen together so frequently, but more research is needed to understand concretely, as with Literally Everything About Endo.
But we DO know: around 6% of people with endometriosis are said to also have fibromyalgia.
A more general explanation for the connection between endometriosis and fibromyalgia can be found here if you're interested in that!
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Inflammatory Disorders
Examples: osteoarthritis, Behcet's syndrome, the autoimmune conditions listed above (as many autoimmune diseases act as autoinflammatory).
Endometriosis, as an inflammatory disease itself, naturally has a strong correlation with other inflammatory disorders.
Rahmioglu et al. (2023), with a sample size of 206,106, found substantial connections between endometriosis and pain and inflammatory conditions on the genetic level.
They report that “Of nine immune/inflammatory conditions tested, [asthma and osteoarthritis] showed significant (...) positive genetic correlations with endometriosis, suggesting a likely shared genetic component. Using the data available, none of the autoimmune conditions showed significant genetic correlation with endometriosis” (Rahmioglu et al., 2023).
Remember that autoimmune diseases are still correlated with endometriosis. All this implies is that the reason for that may not be specifically genetic, as this study centered genetic correlation.
They elaborate: “The genes causally related to endometriosis risk variants have functions in sex-hormone driven signalling, uterine development, oncogenesis, inflammatory adhesion molecules and angiogenic factors.”
Furthermore, “Our genetic correlation analysis highlighted significant correlations between endometriosis and 11 pain conditions - including migraine, headache, dorsalgia, chronic back pain and [multi-site chronic pain].”
“Endometriosis has also previously been linked epidemiologically to increased risk of joint inflammation, but mainly in relation to rheumatoid arthritis, an auto-immune condition, and not osteoarthritis characterised by auto-inflammation.”
— “The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions” (Rahmioglu et al., 2023).
Severe endometriosis specifically is known to come with a significantly increased risk of autoinflammatory complications, such as lupus, Bachet's syndrome, multiple sclerosis, inflammatory bowel disease, and celiac disease.
“Significantly increased risk also emerged for (...) Autoinflammatory diseases: 6%.”
— “Endometriosis Links to Inflammatory Conditions and Other Diseases” (Swift, n.d.) (reviewed by Kim MD).
Atopic conditions such as allergies, as inflammatory responses, are also noted to have some connection to endometriosis.
Now, the raised risks for cancer if you have endometriosis are not HIGH. But they are THERE.
Certain cancers are more likely in someone with endometriosis ... to varying degrees. Breast cancer, for one example, is a present risk factor, but considered negligible (mixed results, more research is needed to know for sure). Endometrial cancer, however, is more significant.
“Women with endometriosis were more likely to develop invasive endometrioid (p = 0.005) and clear cell (p < 0.001) EC. There was no difference in overall survival between endometriosis-associated EC and EC without endometriosis.”
— “Endometriosis and endometrial cancer: A propensity score-adjusted real-world data study” (Farolfi et al., 2024).
So survival rate doesn't change, so but you are more likely to develop EC overall.
— Image source: “Endometriosis and endometrial cancer: A propensity score-adjusted real-world data study” (Farolfi et al., 2024).
A 2020 meta-analysis study by Kvaskoff et al. finds, interestingly, that while ovarian and thyroid cancer risk went (slightly) up in endometriosis patients, cervical cancer risk went down. In detail:
“Not many women with endometriosis will develop cancer. Translated into absolute risks, data suggest that cancer risk is indeed low," said Kvaskoff, noting the following:
– If 1.3 in 100 women in the general female population will develop ovarian cancer in their lifetime, this number goes up to 2.5% among women with endometriosis, which means that 97.5% of endometriosis patients will not develop ovarian cancer.
– Breast cancer affects 12.8 in 100 women from the general population and 3.3 in 100 women with endometriosis.
– Thyroid cancer affects 1.3 in 100 women from the general population and 13.8 in 100 women with endometriosis.
“Approximately 1 in 76 women overall will develop ovarian cancer over their lifetime compared with approximately 1 in 56 women with endometriosis. "These rates are both very low when compared with the genetic-based risk of ovarian cancer (...).”
— “Endometriosis Links to Inflammatory Conditions and Other Diseases” (Swift, n.d.) (reviewed by Kim MD), citing multiple studies.
More research on malignant cells and endometriosis needs to be done, but from what we know: general risks for developing cancers aren't raised significantly, and prognosis does not change if you happen to also have endo. But there is still a raised risk, if slightly -- particularly with thyroid cancer, of all things.
These increased rates could also be related to the fact that having an autoimmune condition raises your risk of certain cancers, like lymphoma, and severe endometriosis is correlated with autoimmune dysregulation. Domino effect type thing? Possibly? We don't know enough yet to know for sure.
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Iron Deficiency
The Seckin Endometriosis Center notes that iron deficiency, largely due to excess blood loss, can be present in endometriosis. This is because many people with endo have excessive or heavy bleeding, or for longer periods of time than others, so the risk of iron deficiency is raised. You're losing more blood, thus losing more iron.
Symptoms of anemia and endometriosis can overlap (“fatigue, weakness, headaches, and poor appetite”). And iron deficiency can open the door for more inflammation and greater chronic pain.
Absorption issues, such as gastrointestinal problems that can occur alongside or because of endo, can have a lot to do with it as well. Someone may be getting more than enough nutrients into their body, but their body may be struggling to break those down.
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Other Pelvic Floor/Pelvic Organ Conditions
Most people with severe endometriosis are going to end up with additional pelvic problems.
These can include:
– Adenomyosis. Most similar to endometriosis, wherein the tissue grows inside the myometrium, the muscular wall of the uterus.
– Pelvic inflammatory disease.
– Pelvic floor dysfunction.
– Weakness or numbness in the legs related to pelvic floor dysfunction.
– Incontinence, most often related to the pelvic floor dysfunction.
– Mobility issues, often as a result of the pelvic dysfunction also (if your hips and pelvis are messed up, it's also going to impact your legs).
– UTI symptoms without having a UTI.
– Any other problems involving the bladder or bowel (ex: pain after urinating) that have already been described.
There are a lot more that I'm sure could happen that I'm not listing but these are the ones I see the most.
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That was a lot. Many many things happened here. I could've included more but this is long enough as is, and now will serve as what I HOPE is a good starting point for understanding endometriosis severity and comorbidity.
But you made it to the end of the post and if you actually did read all of that, I am SO so thankful that you did! As always I recommend combing through all the references and doing your own research where applicable!
Writing Endometriosis: Something Else is Probably Also Going On
If you want to write a character who has endometriosis, there are a LOT of directions you can take with it. Like there is so much to work with here.
In particular, those with more severe endometriosis or deeply infiltrating implants are going to be at higher risk for comorbid conditions -- so if your character has a more advanced presentation of endometriosis, they likely do not only have endometriosis.
It's very important to also do your research in comorbid conditions, and on those additional conditions on their own. Any other complications will impact how a person copes and what kind of treatment they receive.
The same applies even if they just have endometriosis! Where is it in the body -- pelvis, thoracic cavity, etc.? How deep are the lesions? Is it a threat to their immediate wellbeing (ex: a ruptured endometrioma) or is the case currently more mild? Is surgery necessary? Would surgery be possible? What other options are there for symptom management? Does that character need aids for their condition? You have a lot to work with!
The way endo is classified, what system is used and how it's diagnosed, will also depend on where you are -- so the region your character is in will be important when deciding if or with what they are medically recognized.
Endometriosis can present in so many different ways and bring about so many complications that we still don't fully understand. And it's very, very important that you be very intentional with your writing with a disability like this. Since it can be very different from person to person, you can't apply all experiences into one.
My recommendation is to figure out what specific kind of endometriosis you want to write first, and then seek out personal anecdotes of that! From there, you can decide whether or not anything is coexisting alongside that endo. Once you have specifics in mind, you have a good baseline to work off of!
The next topic I plan on covering is treatment for endometriosis and symptom management! Why some things work and others don't for different people, in what cases surgery is and isn't necessary, at-home coping strategies, things like that! Because it's a lifelong condition, it will never go away entirely, but there are a lot of ways we adapt to all the things this disorder throws at us.
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References:
– Advanced Endometriosis Center.
– NHS Leeds Teaching Hospitals.
– Endometriosis Foundation of America.
– Clinical Obstetrics and Gynecology (Zanelotti and DeCherney, 2018).
– Cureus (Batra et al., 2023).
– International Journal of Gynecology & Obstetrics (Coloma et al., 2019).
– Global Library of Women's Medicine.
– My Endometriosis Team.
– Cell Reports Medicine (Khan et al., 2025).
– Neuroendocrinology Letters (Luisi et al., 2015).
– Very Well Health (Bence, OTR/L, 2025) (medical review by Young MD).
– iScience (Farolfi et al., 2024).
– Endometriosis Foundation (1178525).
– Endometriosis Center of Excellence.
– Gynecologic and Obstetric Investigation (Korošec et al., 2024).
– Human Reproduction (Sinaii et al., 2002).
– Human Reproduction Update (Shigesi et al., 2019).
– International Society of Gynecological Endocrinology (Porpora et al., 2020).
– John Hopkins Medicine (Chernofsky MD, n.d.).
– Autoimmunity Reviews (Blanco et al., 2025).
– Journal of Reproductive Immunology (Coloma et al., 2023).
– Hospital for Special Surgery.
– Nature Genetics (Rahmioglu et al., 2023).
– European Journal of Pain (Larrosa Pardo et al., 2019).
– Journal of Neural Transmission (Affaitati et al., 2020).
– Medicine (Yuk MD, et al., 2016).
– Frontiers in Pediatrics | Pediatric Neurology (Boneva et al., 2019).
– Endometriosis Medical Journey (Swift, n.d.) (reviewed by Kim MD).
– Proceedings of the National Academy of Sciences (US) (Peyneau et al., 2019).
– Yeungnam University Journal of Medicine (Lee et al., 2020).
You know your post is good when reddit incels post you on a cringe subreddit /silly
In all seriousness ty for showing us! We don't mind that we were posted bc half of those users probably don't go outside on a regular basis, but we do appreciate being told about this!
Incels? Did you know half of us are women, myself included, and most of us have partners that love us very much. And as for the “not going outside” thing, in the discord I have seen numerous photos of others outside. I’m certain we collectively go outside more than our haters
ok look I don't deny that I'm lucky to have had surgery but. you know streaming doesn't make that much right. I'm not rich. I make minimum wage. you can put the pitchforks down. my country just has affordable healthcare
I think the only way I can reliably ensure I don't get nightmares/flashbacks while trying to fall asleep is by staying up as long as possible so I am extremely sleepy before going to bed. If I don't, it takes me minimum 4 hours of laying there to fall asleep and that's when it tends to happen.
Unfortunately, doing this on any day where I have to wake up before 10am gives me way too little sleep and then I have more PTSD symptoms because PTSD is a sick fucking joke that gets worse with less sleep but prevents you from sleeping properly.
In regards to one of your last posts, why would peopoe be Anti-Recovery? Why would anyone want to suffer?
Generally it's because people base their entire identity around their illness. They spend all their time thinking about it, talking about it with other people, engaging with social media content about it. It's what makes them feel real and "valid". They come to believe, even subconsciously, that recovering would be to take away a core aspect of who they are as a person.
You see this is with a lot of disorders, but with DID specifically, it's because the idea of alters (whether the person genuinely has them or not) becomes a coping mechanism in and of itself. People derive comfort from the idea of having people in their head to look after them, or getting to "be" someone else if they don't like themselves. The problem is this overreliance on illness as an identity just worsens your symptoms, whether you have a genuine dissociative disorder or mislabelled psychosis/BPD/maladaptive daydreaming/etc.
People don't want to recover because their entire sense of self and validity is based around being "multiple people" and partaking in an online subculture based around that idea. Genuine recovery will involve integration, which helps alters to become a more fluid and cohesive whole regardless of whether fusion is involved or not. They don't want their alters to be less obvious and less separated because they won't feel valid anymore.
It's not just a matter of people spending too much time online though. That's a part of it, but chronic/complex trauma tends to come with a fear of a normal life, and structural dissociation tends to come with a fear of other dissociative parts + being hardwired to disavow those parts as "not me". It's how these conditions maintain themselves. Anti-recovery attitudes are just one way these can present.
At the end of the day, a lot of these people don't view their problems as "suffering". They view them as safety. It's hard to realize how dysfunctional you are when you've never known anything different, and you're in denial about how your problems need to be fixed in the first place.
I feel like miku would be more likely to be a normal person too focused on singing to know what DID is, much less what an endo is. Probably would still be calling it multiple/split personalities. She touches a lot of grass
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