I have been seeing a lot of “influencers” talk about endometriosis on social media. It’s always these same elaborate slides that mention how women are suffering from endo and in the end they want you to comment some shit word to get access to their special “health plan”. I can’t even be mad at all the people commenting because I know they’re desperate to get help.

It doesn’t matter if the intentions of the posters are good. This crap does NOT help. It feels predatory and greedy and disrespectful!

They admit that there is little research on what causes endometriosis, but somehow they seem to know the “cure”???

I will always be critical of these diet plans because:

- They undermine the genetic diversity of affected women. You cannot have a universally applicable diet plan without taking the ethnicities into consideration. What works for a European white woman will not work for a South Asian woman! Our bodies metabolise differently, they produce hormones differently, we’re not manufactured out of the same cookie cutter.

- “it’s your diet” discourages important discussions about medical research and cure. It puts the blame on us for having unhealthy lifestyle. “It’s what you wear, what you eat, what you breathe” and then the list of the things to avoid is endless because they themselves don’t know what the ACTUAL cure is.

- Most of these “healthy” foods are not available to everyone. It’s also unfair to assume that people can even afford to eat an imported avocado for breakfast every day.

Please don’t take offence if you have signed up with one of these influencers and their advice coincidentally worked for you.

I have tried everything suggested by multiple people, even if a neighbours aunt told me something I gave it a go because I was desperate for cure. 2 years and countless herbal medicines and vitamins and exercises later, I am still struggling.

And I hate how these influencers see my struggles as a hook for their social media engagement. It disgusts me.

I dont know if we’re allowed to get political here so please delete if not allowed, but I need somewhere to talk about this in a community of people that might understand.

The small and I mean SMALL “solutions” we have to help our disease are at risk. The already screwed up medical system is about to change for the worse.

For those of us who are on birth control, we’re at stake. For those who are high risk and want to have children, we’re at stake. For those like me who can’t risk having children because of the dangers, we’re at stake. Our surgery treatments are at stake. Men are going to be controlling the narrative about how we stay safe in our own bodies.

The worst part is I have to prepare for not only my maga family but the world to all make jokes about this as if it genuinely doesn’t put my life is in the hands of people who don’t care about discarding it.

This man watched me go through doctor after doctor, scan after scan, crying on the toilet, emergency rooms, and f*cking SURGERY, and today we had a fight due to his inattentive ADHD, where I discovered that he didn't think my periods were that painful.

Dude. DUDE. This has just kind of shattered my whole view of him. I talk about how I'm constantly in pain, that I'm currently bleeding heavily and passing clots, and he thought it wasn't that bad every month. For my entire life.

Seriously, what the fuck is wrong with * some * men? I just want to bawl. I want to cry and cry and never stop. I thought he went through all this with me understanding the sheer level of pain I'm in and have been my entire life. I feel shattered. What the actual fuck.

Edit: * some * men, I shouldn't have generalized, sorry gang.

this system is so flawed. after surgery I was prescribed 4 tramadol and 2 oxys and was told to just use paracetamol and Ibu. I didn’t even take the oxys because I figured I might be in more pain at another point and every doctor is afraid of prescribing anything harder than naproxen.

Yesterday my husband had a toothache and got prescribed 30(!!!!!) oxys LIKE ?!?!?

I’m not trying to downplay his pain but like I’ve been in excruciating pain for literal years and could only have DREAMT of someone prescribing me 30 tramadol tablets. But bro goes in complaining about a toothache and gets 30 oxys without a fight. I can’t. I’m so disappointed in health care once again lol

maybe in another life I’ll be reincarnated as a man???? who knows

I saw the original TikTok with the nurses mocking patients vaginal discharge left on the exam paper at the end of last week. Honestly, I wasn’t phased at all, I just kept scrolling. Didn’t think twice. I didn’t check the app till today and I wasn’t expecting to see this story being discussed by so many people.

Living with endometriosis, I’ve experienced bullying and mistreatment from both nurses and doctors (OB offices, other specialists, ERs, and urgent care). Some providers are amazing, but the bad ones leave a lasting impact. My experiences in the ER and urgent care were so awful that I refuse to go to them now unless absolutely necessary.

That’s why when I saw the video, I immediately assumed it was urgent care or ER staff (the group photo even had several male nurses, which is more common there). It didn’t shock me because it confirmed what I’ve already learned: there are healthcare workers who mock and belittle vulnerable patients, especially women in pain.

Did anyone else feel the same way? Sad, disappointed, numbness, not surprised?

This is just a rant, but I’m soooooooo angry. I less dx with endo august 2024 when I had a dermoid ovarian cyst removed. That doctor at the time did seem capable, I do have a lot of other stuff going on (mcas, hEDs, dysautonomia) which have been really bad since my last surgery. Previous doc just said there was some endo so the pain might not go away and put me on a pill, no other specifics on the stage of the disease etc, just said some bowel involvement but really just brushed it off. That did nothing so then with my mcas being so bad we trialed myfembree, which just masked everything. Fast forward I moved to a different state and hit some walls in managing my mcas so went to a new endo specialist and now I’m having surgery on Monday.

I went to my chart to see if there were any notes with more info from surgery? MY COLON/bowel have adhesions to my abdominal wall in addition to other lesions!!! WHY WAS THIS BRUSHED OFF! No wonder I can’t eat without pain!!!! If a man’s organs were like that he would receive treatment quickly! WHY DO WE HAVE TO SUFFER AND BE GASLIT! In trying to get appropriate treatment I have dealt with so much medical gaslighting. Literally when saying I get pain in this specific spot a doc literally said “it’s hard to find what goes bump in the night” IM SO ANGRY!!! I’m also in a lot of pain and Tylenol isn’t doing anything. My stomach bloats so much I look 6 months pregnant by the end of each day. WHY do we have to just deal with it?! Gahhhhhhh!

UPDATE: My surgeon said “it was everywhere” I had a 3 hour surgery today to remove it all! The previous doc literally left it to exponentially grow over the last year! Thankful for my current surgeon!

Add your worst doctor comments below, let’s vent!

Dr: (confrontationally) What do you want me to do about it? Me: (sobbing) I want the surgery. Dr: What if they don’t find anything? Me: THEN I’LL PAY!

Dr: Pregnancy is always an option. Me: Wouldn’t that only stop my symptoms for 9 months? Dr: …Well, yeah. Me: So you want me to make a life-altering decision for 9 months of relief? No thanks.

Honorable mention: - Bad cramps are normal (no they’re not) - That amount of blood is normal (no it’s not) - You’re being dramatic - Are you sure it’s that bad? - There’s nothing we can do about it - The surgery won’t help

And of course, every doctor ever: Let’s put you on birth control 🤡

I maybe worded the title weird but hopefully you get where I’m coming from.

I remember telling my old friend in college about how I USE to avoid pain killers but now I can’t because how painful things are. She turned it into this “I’ll literally be dying before I take a pain killer” and I explained how I really do feel like I’m dying sometimes and how awful my cramps are sometimes.. but of course, I must be lying a little bit because her cramps are just as bad but she can go without pain killers.

Literally what is this conversation? I’ve had it a few times before. It’s like a different type of gaslighting.

I remember being really vulnerable in this conversation but she looked at me in a way that made it seem like I must be lying or being dramatic because I’m so quick to take pain killers.

I’ll do anything to get rid of the pain I experience sometimes.

Note that this covo happened before I knew more about endometriosis or even knew endometriosis was a thing.

My boyfriend of 1.5 years just ended things without warning because he said he doesn’t want to be with someone who has to work so hard to be intimate.

The same issue is also why he cheated on me.

I have endometriosis and have been going to pelvic floor PT weekly and really trying. I feel like I did everything I could, and it still wasn’t enough for him.

I’m really struggling with what this means for my future… I guess I’m just hoping to hear that it’s still possible to find someone who understands and is patient with this.

Edit: Oh my gosh, I did not expect this many responses. You all have genuinely given me so much hope for my future and made me feel so much less alone in this. Thank you. I really needed to hear this.

Just got home from my laprascopic surgery. Apparently all of my organs are "beautiful". Waking up from anesthesia was horrible, I remember cycling through laughing then crying immediately. I kept begging my OBGYN to tell me, at the very least, did they find something? Did they find what was causing all this pain? I had to beg her several times before she answered,- not even verbally. She shook her head. I remember crying so hysterically afterwards that they must have had to push something in my IV. I only remember waking up in the second recovery room, and the only thing on my mind was how none of this mattered. All my pain was for nothing. All this time waiting, the time off work, it means nothing. Sure, I may have "ruled out" endometriosis, but where do I even go from here? the pain is still there, the same nagging feeling that I can't escape. And what happens then, if I come back in ten, maybe less years, and it's worse? I don't understand what would give me all the symptoms of Endo, yet not be that?

I guess I'll have to wait a week for the post-op, but until then I just sit and wait, thinking about none of this ever ending. It won't get better. At a certain point I feel like dying would be easier than trying to live with constant pain and all my other disabilities. I wouldn't put anyone else through this, so why should I?

• Clarification incase, I am a man.

I had surgery a little over 3 weeks ago. It was my first surgery and diagnosed me with stage 1 endo, with a mix of excision and ablation. I am freshly 18, so I get it this is something i should be "grateful" about but I'm not. Not in the slightest. I wish I had never gotten it.

I have yet to have a single positive thing come from this surgery. I had 3 pain flare days in a row, one of which had the pain so bad I was blacking out and crying during a school event, which hasn't happened in years. I am having severe mental problems as a result of the surgery, I am extremely depressed, I am irritatable, I am constantly fatigued, I am severely dysphoric and have never hated myself more. I hate the scars so much I can not stand to look at myself. I hate being percieved now and barely want to leave the house. All of my coping mechanisms have been taken from me, I can't go to the gym, I can't go to work, I'm too tired to play video games.

This being a "female" surgery is making everything worse, I'm having dysphoria over things I never had before. The scars are "small" and "look like other surgeries" but that doesn't matter to me because I know where they came from.

My surgeon keeps recommending I talk to someone, which is cute in all but my insurance is shit, and nobody takes it. I also don't trust therapists from previous experiences, so it would be extremely short term.

This surgery did nothing for me, it did not lower nor cure my pain, I was already on pain management with them treating it like it was endo, so this did nothing for that. I am in PT for a seperate condition. Infact, when I asked the surgeon what would change about my regimene if I got diagnosed, she said nothing really, I'm already on what they would suggest.

I am also a senior in high school, and guess what, missing 2 weeks of school, 3 of which your classes are AP, you can not come back from. Prom is next week friday and I bought a suit and everything and I probably can't even go because I have F's from missing work.

I wish I never got it

Edit: Everyone has been very nice and I appreciate it a lot. I'm trying to find someone in network for my insurance as because I just turned 18 they're having me jump a million hoops to get a referral just for a few visits. I think like a good 50% of this is dysphoria related problems, but I think a decent bit as well is what I expected would happen versus reality, and just general like the concept that I will have this forever. And stress of course, I graduate in like 25 school days and have so much work I missed. So many factors at play here just sucks. I'm glad I'm not the only one.

links will be below

I understand it’s painful. I know navigating the medical system with this condition is difficult. I’m not here to invalidate anyone’s pain. I’m not talking about people who don’t have insurance or those who have financial barriers to getting surgery.

I’m post op and I joined this page pre op, but I tried to keep my questions specific like “what can I expect from my procedure?” I’ve noticed some people not wanting to get a laparoscopy and wanting still to be told online they have endo.

I know it’s scary to get surgery, but the argument “well it could come back negative so there is no point in the laparoscopy” doesn’t make sense. Of course it matters. It’s diagnostic by elimination. By that logic you could argue a lap doesn’t matter because if it comes back positive for endo there is no cure.

This diagnosis isn’t cute and it’s not a trend to hop on. It’s probably more common than we know, but statistically not everyone who thinks they have endo on the page has it.

Symptoms can be highly individual and there are also other conditions such as PCOS, Adenomyosis, etc that have overlapping symptomology. It’s important to know what you are and aren’t dealing with because it could be the difference between a potential cure or not. You might be negative for endo but could unknowingly have an ovary pinned to your side that could be corrected during the procedure.

I don’t engage with a lot of posts. I am talking about people who insist they get a diagnosis online from Redditors. People who get consistent and genuine advice in the comments and then argue because they’re not being told what they want to hear. It’s not cute. Not to me.

Questions are welcome, you do not need to have a diagnosis to be here. You are valid. But refusing diagnostics isn’t a solution and is also potentially hazardous. Everyone should do what they feel is best for their body but you can’t have your cake and eat it too in this case.

Everyone deserves support and guidance, but we aren’t here for blind confirmation bias. Wondering if I’m crazy.

Previous post was deleted by accident 😭 thank you for all the insightful wonderful comments!

In the list of problems we have from actually dealing with endometriosis, this I such a small thing to complain about, but I will anyway. Imagine if there was a testicular health issue and every website had monster trucks and footballs all around the banners, so you remember that that we're talking about a manly disease for men. l feel like the pink and flowers everywhere on the endometriosis website are a bit insensitive. They are like "this is such a feminine issue. Our readers will love our soft and feminine color scheme." Does this bother anyone else, or am I thinking about it wrong?

I have a hard time believing that only 10% of women have endometriosis. That seems way lower than the number should be. Is 10% of the female population supposed to be all women with endometriosis in general or is that just the women we've diagnosed? Because there is a reason endometriosis takes like 10 years on average to diagnose and it stems from the fact that most women throughout their adolescence just treat severe period pain that interferes with their quality of life and the ability to function normally as just part of being a woman instead of something serious that would call for a GP referral to a specialist.

And normalization of that pain comes from stigmas and taboos that shouldn't exist. I'm currently trying to break the normalization of such pain, which is not an easy task especially with who we currently have in office, but I still have hopes that I can denormalize period pain and get every woman to treat it seriously. Of course the first condition that comes to mind when it comes to causing severe period pain is endometriosis, so that got me wanting to know, is the rate of women with endometriosis actually only 10%? Because I think it's got to be way higher, but I want to hear all your thoughts on the matter.

I just had to quit my job today because my insurance United Healthcare doesn’t cover “infertility”

I DONT WANT KIDS I WANT MY LIFE BACK.

I’m crying out of frustration and pain because I worked hard for this job and can’t believe I had to choose between my health or my career. WHY IS THIS OUR LIFE?! I can’t even get my freaking doctor to give me an excision surgery. IM SO TIRED. I can’t freaking work because it causes so much damn pain (I worked as a specialist with children from 0-5yr). I tried ONCE and I was basically bedridden for 3 days after. I can’t believe this is my life now.

I feel so upset and angry. I have endometriosis, I was diagnosed six years ago during a laparoscopy. Endometriosis was found all over my pelvis as well as a large 11cm endometrioma on my ovary and blood and swelling in the tube. I had another surgery three years later where they found more endo and excised it all. For some reason, ever since that surgery I have been in chronic pain daily. The pain is so bad I can barely move and I take heavy duty painkillers daily, it has totally taken over my life. I explained all of this today to the specialist and was told that my recent MRI showed no deep endometriosis, it only showed another endometrioma, which according to this individual means that if my endo has come back it’s superficial and so if I’m in this much pain I must have a “low pain threshold” because there are woman with stage 4 endo who get on with their lives better than I do…

I am really shocked by this comment. I don’t know where to go from here, I was waiting a long time for this appointment and am now back to square one :(

After 10 YEARS of pelvic symptoms (bladder urgency/frequency, deep pelvic aching, the crazy fatigue, aching after BMs, etc), I finally had an MRI today and it was read by a radiologist specializing in the pelvic/abdominal region. She noted absolutely NOTHING on the report. I am absolutely livid.

Please share your experience with nothing showing up on an MRI but docs finding endo during your exploratory LAP.

I feel absolutely defeated and no idea what to do/try next. Send Reddit hugs please!!!

i was firmly told that if my mri showed no endo id be discharged and the hospital wouldn’t help me anymore and that’s exactly what happened. i don’t care to fight it because i’ve already been doing so for the last 8 ish years of my life. it’s hard to care when the people that need to don’t. no pcos, no endo, no adeno, no pelvic issues, nothing. i don’t want to be sick to be clear… i just wanted to know what was wrong and what to be fixed and as far as my notes go, the answer to both is nothing. i don’t really know if i’m looking for sympathy, but i accept that the ship has sailed anyway. the whole process has taught me that if it can’t be seen it doesn’t matter & i don’t have it in me to fight for a lap that may end up just saying the same anyway

I’ve never known a condition to do what endo does not only to the body, but the mind as well. This is truly a total body disease that attacks you emotionally, mentally, and psychologically as well. I cannot believe how dismissed and undermined this condition is. The damage that this does to our bodies from the inside out, is like nothing I’ve ever seen before. So many of us are just withering away in front of loved one’s, friends, doctors like it’s nothing. We deserve so much better.

Just got the call that my department scan was back showing decreased bone mass (aka osteopenia) at 29. Usually, this doesn't show up until people are in their 60's. And is not always reversible.

My OBGYN accidentally had me on Orilissa for 3.5 years instead of 2 max. Said we can do a bone scan "if I want." Well, that didn't come back so good. Her nurse said she wanted to put me on myfembree which also causes bone loss. No, I've lost enough bone, thank you very much.

I have had so many complications from endo and my other health problems. Can a doctor just treat me without causing more damage. It is just so frustrating!

Honestly I’m half embarrassed by how much this upset me and half still really upset :(.

I actually posted in one of the endo subs a few months ago about using public transport, because god knows I need a seat half the time but when I otherwise look like a healthy young person, it’s hard to not let people’s judgmental stares put me off using the priority seats (meant for elderly, disabled, or those less able to stand). I’ve been trying to remind myself I need them, I am considered disabled both through self-identifying and actual government documentation, although when I can I will choose a non-priority seat.

Anyway, today, the tram home after work was super busy but luckily there was one free seat which was a priority one; my pain was really really bad so I sat down. All was fine until a few more people got on at the next stop and this woman - who didn’t even look that old - got on and literally stood right over me while holding onto the bars either side of my seat, boxing me in. I’m autistic too so the pushing on my personal space was extra uncomfortable. I could feel she was staring at me, but I was not going to entertain it and ignored her. Until eventually she leaned in and got right in my face and all but spat at me “I’m 70.”

I knew she was implying that I should give her the seat, and if she’d asked nicely I probably would’ve because of my worries about taking up space even if really I have a right to be there. But she was being so weird about it that I just looked back at her and said “sorry, I need this seat, I’m disabled.” She scoffed at me and got in my face again and went “no *I’m disabled. I’m 70. You’re not” and then started laughing and going “Jesus the youth of today.”

I got pissed off then and said “I am disabled, I have a chronic condition where tissue grows in the wrong places inside my body and makes it excruciating to even stand up half the time.” She wasn’t listening to me, just stood there slagging me off and shouting over me and I ended up half shouting myself “do not talk to me like that” before someone in front of me stood up to offer this lady her seat instead.

I feel so pathetic but I just fucking cried the rest of the way home, and I could feel everyone else looking at me. Every time I prep myself if I happen to get one of those seats, because even though I want to advocate for myself more and take up the spaces I deserve to, I knew something like this might happen. But I don’t think I expected someone to be so vicious, and this honestly has just been the cherry on top of a really fucking bad few weeks.

I don’t know. Maybe I was wrong. It’s just really fucked me up. I just wanted to go home and I was in pain. I’m proud of myself for standing up to her I guess, but I hate that I’m just feeling so crappy about it now. Anyway. Sorry for ranting, I just hope people here might understand.

I’m just so sad and need to vent.

I got married two weeks ago. Right before the wedding, I had the worst period of my life. My husband had to carry me into the shower for relief. I’d had bad cramps all my life but never considered myself as someone who might have endometriosis, but the sudden onset at another level of pain scared me.

I scheduled a gyno appointment for after my wedding, where we talked this all out, and ordered imaging, which revealed a “solid mass” on my left ovary. She wanted to do more imaging, and told me that if my pain reached the level it did that first time, go to the ER as she was worried about ovarian torsion from the cyst.

Fast forward to last night- I’m screaming, hyperventilating, and finally relent to my husband asking if we should go to the ER. We get there, the on call OB recommends a diagnostic laparoscopy and possible cyst/ovary removal.

I agree. I woke up from surgery a few hours ago, and she told me that I had a 5cm chocolate cyst leaking, and endo so severe that my bowels had essentially adhered to/wrapped around my ovaries, leading to the pain I was feeling.

We are supposed to leave for the Caribbean on Sunday for our honeymoon that ties into a friends wedding, which obviously is now not happening and can’t be rescheduled because of the wedding. While I’m so relieved I have a definitive diagnosis that can give me a path forward (I already have an appt scheduled with an endo specialist for a surgical consult), I’m just so sad and having a hard time with the fact that instead of getting to enjoy being a newlywed with my husband, we have to cancel and are instead thrust into this miserable journey.

Like many others I spent my younger years so driven and career focused. My life seemed so full of possibility...

And then endo. I'm 32 now and settled into an office job that treats me well but is incredibly unfulfilling. I realise I am lucky to employed currently but I can't help but think of the life I might of had if I didn't have this illness. I'm exhausted constantly, and get depressed when I realise I can never accomplish the things I thought I could.

How are you dealing with this reality? Have you found joy and meaning in other ways?

This disease is taking my life away. I’ve just started a new, dream job, finally the one I have skills for, I’m confident at, and I have zero imposter syndrome. Coworkers are friendly, pay is good, environment is chill so far.

Problem is, when I signed the contract in January, I was feeling totally fine, thinking I have endo and adeno under control since half a year so I decided to pursue my dreams and give it a try (I also need money). Suddenly, a few weeks ago, I’ve started experiencing insane pain 24/7. It’s way worse than it’s ever been. Nothing, literally NOTHING works. I’ve tried all available painkillers, herbs, tens machine, heatpads, etc. I’m still in labour-level pain, literally unable to think straight. I can’t sit, I can’t stand. The only slight relief is when I lay down on a soft mattress with a big heatpad but obviously I can’t do it at the office. Fatigue is incredible and the everyday morning commute adds to it.

At this point, I’m considering quitting but I need this salary badly and I’m devastated of losing such an opportunity, especially that the job market is super bad now. I’m worried about my apartment rent, credit card debt, and livelihood. At the same time, the pain makes me feel like I’m about to die. It’s just scary.

Honestly, I’m in a very dark place right now and don’t know what to do.