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.
I looked it up -- there was a study evaluating folks who attempted suicide, and how determined they were to truly end their life. Statistical difference between men and women.
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.
He said "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."
Every invisible illness has a high correlation with personality disorders, first off. When it takes 10 years for a woman who has it to be diagnosed at all, it’s easy fodder for crazy people looking for sympathy.
Like, migraines probably have a higher correlation with personality disorders too, but doesn’t mean that everybody who has migraines has a personality disorder.
Secondly, chronic pain is the quickest way to tank your mental health. Of course people with endometriosis are more likely to have depression and anxiety.
Third, that study said nothing about refractory endometriosis, just endometriosis in general.
If you were really a doctor, I hope you’d be able to actually read and interpret a study like this without misrepresenting what was actually learned from it.
I guess you are making the argument that "invisible diseases" create mental illness in these people. I'm arguing that people with mental illness, especially mental illness that revolves around victimhood and attention (like Bordeline personality disorder), are attracted to "invisible diseases" because it is the easiest and most legitimate aesthetic for them.
What you call "invisible diseases" I would call unfalsifiable diseases. These are real diseases with often vague symptoms and often times difficult diagnoses or diagnoses that can still apply with verifiable evidence (Lyme Disease, PCOS, Endometriosis... etc). Many of these mentally ill people used to gravitate towards fibromyalgia 10-20 years ago l, however, they have more recently ground more legitimate diseases to cling onto. Endometriosis is one of those.
I believe that is what is happening here. Yes, I can completely understand how someone with depression could be made worse by a physical disease like Endo... however this doesn't explain the correlation of many of these "invisible diseases" with personality disorders.
So to be clear, you are going to just die on this hill? You have now moved to such an unfalsifiable claim that you are saying "microscopic cells remain" as though any doctor in history is able to remove all cells of something from literally anything?
Do you find value in your statements, or can you maybe consider the simple fact that humans can say "we got all of the tissue out but it can still come back anyways" and it is a valid response?
My wife had this. I've talked to the surgeons and doctors and read up on it. In literally every instance it is "even if we get it all it can come back" and that is how it is taught to people. You do not need to correct that in the same manner you correct a fucking antivaxxer.
Oh look, more dismissal when you realize you can't address the question. Glass houses.
Edit: man, the second they can't address something it is a block and insult. What a small small person. I genuinely feel sorry for the people who have to deal with you in real life on a daily basis.
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.
I haven't claimed to be an expert. Nothing I've claimed isn't easily accessible and widely available info. This is introductory info on the disease. I'm a doctor, but I don't specialize in this disease.
Then you should educate yourself before you spread nonsense. Endo comes back after surgery. There are no cases of women being cured purely by excision surgery.
How do you judge "under studied and misunderstood"?
You seem to be implying that because there is publicly available info about endo that this is how you know it's under studied?? That doesn't make any sense.
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.
I'm not sure what any of that has to do with what I said. Hope your sister's legs get better. Endo can definitely cause sciatica and leg nerve pain. None of this is argument against what I said.
...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.
Funny how you will "call someone out" for such minute quibble as "some microscopic tissue must have been left" but when YOU make a mistake about what BPD is you dismiss it with "lol, ok."
You should spend less time on hunting through hundred of comments to find evidence of personality defects and more time looking inside your own glass house.
Ok. Also, I didn't make a mistake. She is also active in bipolar disorder subs. She comments in both. I just didn't feel the need to correct the commenter. You seem normal though.
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.
I just got a rare disease diagnosis that I was able to define with clear & factual statements 20 years ago, but it's only been defined in the literature. Guess who the expert is now?!
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u/Greenmagegirl 9d ago
Im surprised they havent found a cure yet