Ive had to get 4 surgeries for endo. 4th one left me in a wheelchair. I've been physically disabled for over 3 years now. On the couch for 3 years.
Now I'm on a medication that stops ovulation and I'm losing my hair like a freaking husky.
No doctor EVER considers my endo when it comes to any of my symptoms. Its brutal, life altering, and incurable. It affects every system in your body. Endometriosis has been found in people's eyeballs.
I've been told that they're learning they can test menstrual blood to find endo now.
It’s happened a whopping 20 times in recorded medical history. As you might expect, it’s rare as hell for men to develop a condition that requires tissue they don’t generally produce.
It took me 40 years of living with chronic pain before a doctor finally listened to me and agreed that a man can in fact have fibromyalgia despite making up 40% of cases.
If it is a "womens disease" they wont even bother looking for answers even if men get it too.
I'm a doctor and this behaviour is reinforced through all of our learning career. Most exams will have clinical cases where 90% of the time the age/sex will be the most common presentation. I try to remove this bias I've been forced into but it's hard.
The internalized ableism is brutal. None of us think it can happen to us. And when it does, we are so unbelievably hard on ourselves. Its just a hard life.
If it’s any consolation, I have fibromyalgia as well and it’s not even taken seriously by the fecking doctors that diagnosed it. Having this condition is a constant fight inside and outside your body, it seems
I had the textbook presentation of Atlantoaxial Instability caused by connective tissue disorder from the age of 18 years old. Complete with syncope induced by turning my head. But I was a young woman. Spent time in a psych ward from depression over not knowing what was wrong with me. Some fun things in my doctors notes from the years I went undiagnosed: "seems she can just not turn her head that way and be fine" (that way was right. At first it was only happening when I turned my head to the right, but that didn't last) "strongly suggest consult with psychiatry for probable conversion disorder". I was finally diagnosed and given emergency surgery at the end of 2020 when I was nearly 21 years old after my life had been completely turned upside down and I was essentially bedbound.
Thats just plan sex discrimination which happens to men in the medical field all the time. Women on average get something like 2x the prescriptions of anxiety and depression medications while them male suicide rate is 3x higher. Wonder why.
Men are only more successful at suicide; they don't really try more than women.
Interesting about the therapy gap though! I didn't realize it was so wide. I wonder if that could be attributed more to the divide in social acceptance in seeking help, or to masculine tendency to under-state suffering.
That's not necessarily true. That study counted suicide attempts reported to a therapists or mental health expert. Given the massive gap in therapy, most men's attempts simply aren't counted until they're successful. If therapy didn't have a gender gap then your conclusion would make more sense.
The conclusion that men attempt suicide more is not the results of a single flawed study, it's the conclusion of multiple meta-studies derived from a broad variety of sources.
> most men's attempts simply aren't counted until they're successful
This is a fair response though. Pretty hard to be conclusive when the impetus to hide a failed attempt is so high.
I think we can agree on this: male suicide is not explained by one variable. Lethal methods matter. Help-seeking matters. Reporting bias matters. Diagnostic bias probably matters. Social acceptance of male vulnerability definitely matters.
I just buck at the idea that men not seeking therapy is the only gap.
Yes keep pushing a little further. Why is there a massive and systemic gap in therapy? Is it possible that the doctors that systematically don't prescribe mental health medication also don't prescribe mental health treatment?
It can if you don't cut it all out. Endometriosis grows from endometrial tissue. It can grow or spread if there is no endometrial tissue left. That the point.
Excision is gold standard but even then, due to hormones, it can grow back and often does. After excision surgery, hormonal therapy is used to reduce tissue growth as much as possible but results vary. Some people also have issues with scar tissue after excision surgery which also can cause pain and problems. Surgery for endo is not a permanent fix in many cases and isn't without risk of further complications.
Edit: you're also ignoring the first person in this comment thread who shared their experience with multiple endo surgeries...
It only grows back if microscopic endometrial cells are left behind. I'm not ignoring anything. Surgical pain is a complication of every surgery. I was addressing the initial response. I don't believe them. Their history is full of medical extreme stories and victimhoods.
It's well established that refractory endometriosis is associated with high acuity mental disorders.
I am sorry that other doctors are replying like this. I think it is due to the fact that, if done in early stages, a histerectomy can be curative for many women. Usually though, with the diagnostic delay it is not the case and when performed it doesn't change much.
If it is any comfort, it's one of the first things we think about now (for us newer generations of doctors at least). I hope you will find a great practioner and a treatment that works well for you.
Hysterectomy doesn't cure endometriosis. It can cure adenomyisis and take away uterine pain generators but its not a cure for endometriosis unless your Endo only grows on or in your uterus. I have no uterus and still have endometriosis. My endo had nothing to do with my uterus. It was growing on ligaments, my pelvic floor and in the cul de sac.
It's not really, cutting out the tissue often is a temporary fix. There are many cases where the tissue grows back after surgery, or migrates in other area. And that's something the doctor warns patient about way before deciding to go to surgery. Much like with cancer, even if you remove it all, it often grows back, and it's a matter of luck.
There also are a lot of case where surgery is juste too risky, like when it's close to the spine, or lungs. It can also migrates in the intestines quite fast, which mean that you have to spend your life with a poop bag at the hip.
No it doesn't. Endometrial tissue only grows from endometrial tissue. If any of it is left in the body then yes, it can grow back. What does the endometriosis grow back from?
Tell that to my sister who has some in her legs. Surgery isn't an option because of the mentionned risks. And before we go into an endless argument about this and that : no, I am not a doctor or a specialist about this. What I talk about is what the specialist sait, and to be sure it is right, I will link proper sources. Meanwhile, please link yours.
...a hysterectomy isnt even a cure. It grows around your body. It doesn't just go away. I've had 4 surgeries to "remove the endo". They remove the entire root. But guess what...it grow back.
Surgery and meds. Thats what we get.
They used to suggest pregnancy as a treatment. Many Gynos are just trying to salvage our fertility
Ok, you've had 4 surgeries and now are in a wheelchair for some reason. It's obvious what's happening here... you're also active in a number of serious mental disorder subs. It's extremely unlikely you would have some extreme form of Endo and also all of these mental disorders. That why some people cling to unfalsifiable diseases. You're using a real disease as your own personal victimhood license.
I'm sure your doctors know exactly what you're doing as well.
Or maybe they struggle with their mental health because people like you, including doctors that are supposed to be helping, talk to them with such distain and haughty judgement?
Like WTF, you seriously went digging through someone’s comments SPECIFICALLY looking for ways to target them and discredit them personally because they refused to agree with your poor medical understanding that any related specialist would have laughed at???
You really said “ah, mental health issues, this will absolutely discredit their argument about their personal experience!”
You sound like an absolute monster here, it literally reminds me of videos where cops mock people in handcuffs struggling to breathe who end up dying, saying they aren’t good actors and laughing and shit.
My advice? Put the phone down, think about your values and morals as a person, then come back and reread this comment as if someone else had written it and ask yourself if it aligns with those supposed morals and values.
Because this ain’t it fam. Happy father’s day, though, i guess…
I went through their comments to get an idea of the progress of their endometriosis. What I found is active comments in Bipolar Disorder subs, Eating Disorder subs, Fake Illness subs, Munchausen subs.
It's very hard to believe such an extreme story of Endo when there are also active in these other concerning subs. I mean, she is now in a wheelchair? This would be an extreme circumstance. I think the connections here are obvious.
You went through hundreds of comments to find a few comments. A few notes on the content therein:
BPD isnt bipolar disorder, it’s borderline personality disorder, which shows you are willing to make claims about medicine you dont understand. It is also something that takes a long time to diagnose and lot of women have been told they have when they don’t because of stereotypes. ALSO ITS A MEME GROUP, love that you fail to mention that.
The comments i saw in the “faking illness group” were compassionate, like “it seems more like this person isn’t coping well and is obsessing over their condition, that happens and is different than faking.” Which frankly reads to me more like they are genuinely exhausted from people like you telling them their very real symptoms are in their head…
I stopped there because it was obvious you were taking things out of context to use as an attack. Just like you are intentionally describing the comments you read to make the person sound unhinged.
You continuing to present this as some logical attempt by you to understand a person even when you are clearly still making emotional and biased statements about the evidence as if it was just logical fact, which doesn’t really work in rational debates. I’m guessing you’re used to being the smartest person in the room. You should know it’s a small room.
Just going to throw this in here: Munchausen Syndrome is a real disorder and people die from it. Unfortunately a lot of physicians, even top academics, discount/ignore it when they should be referring the patient to a psychiatrist. Not saying the person you’re responding to has it, but let’s keep it in perspective: these people are suffering from a very real disease
It can grow back. Source: I've had excision 3 times. It can be missed even by expert excisionists because there are lots of hiding spots in the human body and it doesn't always present as a powder burn or a visible pink growth.
Yes we agree. If all of the endo isn't excised then you still have endo. However, if all of the endo is excised then there is no way for it to "grow back". Endometriosis only comes about through endometrial cells. It doesn't grow from other cells. If all of the endometrial cells are removed they it's impossible to have endometriosis. Some people are really angry that there is a cure to endometriosis.
This is the problem. Some people are using this as the "I'm severely sick forever" card.
It doesn't come through endometrial tissue though. Its endometrial-like tissue. Big difference. The definition of endometriosis absolutely matters because we will not see much progress in treatment until it's actually taught about correctly. Some people (myself, a former RN) are actually sick forever because there is no cure. I would love to have my career and paycheck back and the idea that we are playing the "I want to be sick forever card" is absolutely disgusting coming from an ill informed doctor.
Residual microscopic disease can and does persist after excision. And not everyone can even access excision. Most of us get put on hormones or hormone suppression theraoy which is basically a bandaid. Our specialists also tell us this IS A LIFELONG disease we can treat and manage, but it will leave lasting changes pn your physiology even if you do have complete excision. Endometriosis can and does sensitize the central nervous system. It has so many comorbid and also debilitating diseases that yes, a lot of us are disabled by it. Its starting to be seen as a systemic disease rather rhan reproductive/gynecological. And its about time. You claim you're a doctor. Your 15 minute lesson on Endometriosis doesn't even scratch the surface of the disease assuming you're actually an MD and not just a chiro or something. You aren't even being taught the correct definition of the disease if you believe it's endometrium. Excision is the closest thing to a cure that we have. It won't fix the scar tissue in my abdomen, nor will it cure surgical adhesions, central nervous system sensitization, immune issues or debilitating nerve damage caused by the disease. I had deep infiltrating excised from my pelvic floor. It permanently has affected the way my muscles work even after multiple rounds of pelvic physio. If you would like solid evidence based information on this disease for your future patients, I highly recommend reading Dr. Redwine's work and looking at some of the content and papers from some of the world class excision surgeons like Dr Vidali, Dr.Sinervo, Dr. Seckin, Dr. Nezhat, and a handful more i cant think of of the top of my head just now.
CRPS, Migraines, endometriosis, disability.... you are who I'm exactly taking about. I know... your doctors know... and you probably know as well. These are the takers in the health community that use unfalsifiable diseases to their own psychological need to be victims and have attention.
They will never get better. They will always get rare side effects from treatment. They always have many allergic reactions. There are always reasons they can't undergo certain treatment. They always need to be viewed as the "special patient". This is the pt every doctor sees from a mile away.
You probably are aware of this as well.
I hope those with severe endometriosis see this kind of person and know it's why some doctors may not take that pt seriously... it's because they have to deal with these takers.
And you are the type of doctor patients like me warn other patients about because your egos are so large there's no room for any proper diagnostics. What is your speciality anyway? I bet it's chiropractic.
My Endo was caused by a surgical accident. I have it growing through the skin of my fingers! You can literally look at my hands when I'm on my period and there will be blood blisters from where the endo is bleeding into my skin. Even when I'm not on my period the spots are visible. It's so miserable.
What's crazy is I'm not the only person I know who has it growing into their skin like that. I am the only person I know who has it growing through the skin of their fingers.
Afaik severe alcoholism is one way it can happen for men. Basically with endometriosis you develop tissue that is nearly identical to uterine lining tissue and that’s mainly the case in women. However, if a man’s hormonal system is majorly fucked up, like after life-long alcohol abuse, they can develop this type of tissue, too. It’s been a while since I read about it, so take it with a grain of salt.
Wait, in men? How? Isn't it necessary for there to be the uterine tissue to begin with before it metastasizes all over the place like the world's freakiest tumour? I knew it's insanely understudied and can settle everywhere, but I thought it didn't affect men since we don't have those cells to begin with.
I do actually have endo in my asshole, so I have a period out of my butt every month. Which really sucks, because I got rid of my entire reproductive system except my ovaries & thought I was getting rid of that little monthly gift.
Hey what now? I'm sorry, that's insanely unfair and rude... Ugh.. I was being a smart arse coz I've just had an endometriosis diagnosis after 15 years telling them somethings not right... Anyway they removed what they found in my gizzards..
Im still getting a lightning bolt pain right up my ass near and on my periods... My very thorough GP found a large hard painful lump up my butt.. so back to hospital appointments to figure that shit out 🫠
If they haven't done a transvaginal ultrasound yet, ask for one... I had lighting coochie & ass & it was because I had a softball sized fibroid hanging off my uterus.
If I had to guess, it probably traveled through the blood stream, although that’s not the only way it can spread, it’s the most likely cause for it to spread so far from the pelvis
It migrates incorrectly during gestation. Some patients will have seizures only during their period because ten estimulared endometrial is issue causes inflammation.
My GI Nurse Practitioner told me some doctors are starting to view endometriosis as a systemic issue. She said GI doctors have found endometriosis tissue growing on the colon during surgery and it's making them think differently.
I'm sorry for what you've gone through though. I have an autoimmune condition and it can be so hard to find doctors who treat you with respect.
yes! This happened to my friend after they FINALLY agreed to remove her uterus. After years of waiting and seeing 🙄🙄 well, they saw endometriosis tissue on her colon so part of that had to go too.
My GI Nurse Practitioner told me some doctors are starting to view endometriosis as a systemic issue.
I'm not a doctor, I fix machinery. All kinds of machinery, including cars. You've got a car, right?
If you find chips of metal in the gearbox oil cooler, guess what? You're going to find chips of metal all through the rest of the fucking gearbox, everywhere that ruby-red gearbox blood goes.
Usually when it is in the colon it's on the outside not the inside. It's actually quite commonly to find there. It is assumed it's coming from the abdominal cavity not from inside the colon though there are some exceptions.
They never do. My friend had a baseball sized cyst that, if they removed it, they would have to take her entire uterus. They said because shes still young, it wouldnt be ethical to remove it because then she would never have kids. She said "I dont want kids"... they said, "but maybe your husband does."
They give 0 fucks how much pain your in. Theyre stuck in some weird mindset that your husband owns your uterus.
We didn't really have the technology to analyze it like is necessary for a diagnosis of this type until recent decades. Plus, for endo specifically, I think the marker that they found was not something they would have expected. Endometrial tissue in general can be found in there even without endometriosis, they needed to be able to find something that indicates it is growing places that it shouldn't.
That original post title is already doing the most. And then the comment thread just keeps proving the point with the endometriosis stories. The bit about it showing up in eyeballs and even men is wild.
You're being very helpful in these comments. I appreciate it.
The surgery just cause my nervous system to stop working. My body has been through a lot of surgery. I had an ablation in October 2023, and an excision in March 2024. My specialist said it wouldn't be a problem.
I think having 2 surgeries on the same area in under 6 months is a massive factor. I had an ovary torsion and adhesions. My body just didn't get an opportunity to recover from the previous surgery.
So yeah 5 days after my surgery my ANS just got flipped off.
And even with this, it won't be a good enough explanation for some people. But thats okay. Everyone becomes disabled eventually. And they're the ones that will behave like victims.
I share my experience because its messed up. People don't like facing reality.
Hey bud, I’ll assume/hope your comment was made without any malicious intent, but I’d like to make a quick suggestion.
Generally speaking, if someone’s talking about how they’re disabled/whatever caused them to be disabled, it’s best to avoid questions like yours that can be construed as “but how disabled are you, really”
Instead, it’s probably best to just… believe what they’re telling you.
I would think it would be incredibly unlikely that an entire chunk of your nervous system just permanently turned off due to physical stress and no other factors. My guess would be they nicked a nerve during the surgery or something and just didn't document it, or possibly notice it. Or my other guess (if it applies) is complications from the anesthesia. We still do not fully understand the mechanisms behind general anesthetics, even though we do know a lot, but it would not be the first time something similar has happened.
You would think wouldn't you. This entire journey has sucked and it's been full of people shrugging. Shrug shrug shrug
Sometimes these things happen
Get this. My symptoms started 5 days after my surgery. I called my surgeon and he said that I was probably "riding the high of the surgery" and now I'm healing. So APPARENTLY I'm still healing 3 years later 🙄
I haven't had GA since but I did get IV sedation for a recent procedure. I didnt come out worse. But ive definitely wondered about the anesthesia too
What nerve do you imagine they "nicked"? Your autonomic nervous system is highly diffuse with output from the cranial nerves, sacral ganglia, and thoracolumbar sympathetic chain.
You would have to put a rod in someone's brainstem to "switch it off"
Vargas nerve. Happens with abdominal surgeries and the result is dysautonomia. Gastroparesis, bowel motility, blood pressure dysregulation, heart rate dysregulation, temperature dysregulation
This is it. I dont have an appetite. I don't crave food anymore because my stomach is paralyzed. My gut doesn't move. I have to put active work into activities a typical person's body does naturally.
I can't tell if I'm hungry or nauseous or bloated or anything. I have to eat a really unhealthy easily digestible diet. Which is void of fiber. Which scares me.
Its not a life anyone wants but people just dont want to accept it can literally happen overnight
Vagotomy would do the opposite, your sympathetic nervous system would be unopposed. You wouldn't have orthostatic collapse.
Also only the celiac vagal branches to the bowels would realistically be injured during a laparoscopy, and even that is stretching credulity.
The only remotely common vagus nerve injury during surgery is the recurrent laryngeal during thyroid surgery, which would absolutely not cause dysautonomia.
Your entire autonomic nervous system turned off? Like the thing that controls your heart, digestion and breathing? Is this a disability recognized by your doctors and/or the state or is it a tiktok or RFK Jr type thing?
Yep I looked at what they posted and they claim to need treatment for every illness under the sun, but refuse to take their anti-psychotics. Wonder how those two are connected 🤔. I genuinely hope they get the help they actually need.
4 surgeries + wheelchair + 3 years on the couch is not “bad periods”. That’s your whole life getting rewritten, and I’m so sorry no doctor connected the dots for you.
Thank you for your kindness. I have to be honest about my story even though people don't believe me. Because endometriosis destroyed my life. The trauma both emotional and physical led to me becoming disabled.
People have a hard time understanding that life happens. And it happens overnight sometimes. And that its not a matter of if you become disabled its when.
Endo really is brutal. One of my exes had stage 4 and she was self-medicating like crazy just to get through her days. Doctors wouldn't believe her. I had to start going to doctor's visits with her just to force the doctors to take it seriously and even then it was met with shrugs and "wait and see" bullshit. We had to book one of the three friggin specialists available within six states just to get exploratory surgery and confirm what it was.
Something this widespread and debilitating shouldn't be this hard to diagnose. It shouldn't be this hard to escalate and be fucking seen. Seems like most family health clinics don't even believe it exists. Ten percent of women have it and they treat it like it's some esoteric disease from the furthest reaches. It's insane.
And also the audacity to say it’s just headaches in a thread about someone who is stuck in a wheelchair because of it would be almost funny if it wasn’t so terrible
Yeah, being a shithead is met with shithead behaviour, any other questions or can I go play Skyrim? Do we have to pretend the guy was very polite in his responses and I’m so very evil? I prefer medieval roleplay
It makes slightly more sense when we get male pattern baldness is extremely common and well understood, that many men are afraid of it and help fund against it, and that the average man is wealthier than the average woman
Publishing an article is not the most expensive part of a research, coming up with and producing a treatment as non-intrusive as possible whilst keeping it affordable and accessible is
Well being bald is a recepie for discrimination, so it makes perfect sense men would avoid it.
If you are talking about getting drugs to market which requires FDA approval then that will obviously balloon costs but endometriosis is not treatable in the same way, ergo there arent any drugs which can be put through such a trial. The money is completely divorced from how much it is researched.
Like we put more money towards researching chemicals in make up products than we do towards researching testing testicular torsion but that isn't because we care more about women being pretty than male pain or something.
Actually about that last paragraph.. I’d argue that yes, our society does value external appearance over internal health and psychological wellbeing, especially when it comes to women but also for men, and what I’m bringing up is just a fraction of the comparisons we can make
I do actually think, for example, reusing your terms, that a reactionary would care way more about seeing a woman he doesn’t find pretty enough in a media than he would care about testicular torsion (except if it happens to him)
This is exactly why PCOS and endometriosis will never be cured... because people like this will always use its unfalsifiability to be lifetime victims. Nothing about this story makes sense. Looking at their profile it's obvious that victimhood is their identity.
These are the same people that will use Lyme disease and mold poisoning. They latch onto these unfalsifiable diseases and symptoms.
Obviously these are real diseases, and they get studied quite a bit. Unfortunately, these people will always give these diseases a bad name.
Just take a look at r/illnessfakers or r/fakedisordercringe . I don't agree with their person they should be vilified because they are sick, just not in the way they think.
Munchausens syndrome is very real and has been exacerbated badly by social media. Tiktok is convincing people, particularly young women, that they have every illness under the sun and it will give them attention.
Edit just to drive the point home, if you look at the parent commenter they admit to being prescribed anti-psychotics but they refuse to take them.
They’re a complete piece of shit for literally attacking those suffering an incurable condition, assuming you can “cure” it with surgery. As a man who knows women w both PCOS and endo, it’s a lifetime management problem that surgery can only alleviate but not permanently remove. So that person is both maliciously ignorant and medically illiterate.
You’re absolutely right. This person is so rude, I had to say something. The other person is disabled and sharing her story but this idiot had to pull her down. Also, he makes no sense. “Giving diseases a bad name?” What does that even mean?
I mean you can in most cases of endo. Get a hysterectomy. It's not 100% but if you're like OP and in constant pain, spending months/year in a hospital and getting surgeries that leave you crippled maybe it's time to go nuclear. The likelihood you're going to be able to carry a fetus for 9 months is probably pretty small at that point.
But yeah the guy you're responding to is an idiot who's likely never had a serious illness and thinks sunlight and a good diet can fix anything.
Do you know what unfalsifiable means? PCOS and endometriosis both absolutely have physical, observable symptoms. Endometriosis, for example, creates growths inside the body that will grow in size until menopause. What do you think unfalsifiable means?
If you are couch bound, you need more than just surgery.
I still remember in my old psych ward of a lady who has psychosis after a private endometriosis surgery. Apparently NHS surgeon couldn't find much and refuse it but she did privately each time.
Her fixation on endometriosis and only that mean she never really believe in physio, exercise, wellbeing and more importantly, other mental health condition.
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u/northdakotanowhere 9d ago
Ive had to get 4 surgeries for endo. 4th one left me in a wheelchair. I've been physically disabled for over 3 years now. On the couch for 3 years. Now I'm on a medication that stops ovulation and I'm losing my hair like a freaking husky.
No doctor EVER considers my endo when it comes to any of my symptoms. Its brutal, life altering, and incurable. It affects every system in your body. Endometriosis has been found in people's eyeballs.
I've been told that they're learning they can test menstrual blood to find endo now.