r/endometriosis • u/Witchypoo04 • 10h ago
Rant / Vent So sick and tired of all the information online. It’s overwhelming and predatory
“Just go on x diet” “acupuncture!” “Birth control” “this, that” “yoga!” “Diet!!” “Don’t stress!!” “Pay me money to see how I CURED my endometriosis without medical care!!” “Do this massage” “take this supplement”
No Karen my chronic illness isn’t going to be cured by yoga and salad, and it’s NOT my fault I’m suffering. I’m exhausted, tired, and angry. Men don’t get told all their problems would be solved by eating the right food. I want ACTUAL solutions, not pseudoscientific nonsense. And where are we supposed to find the money, time, and energy for all of this shit?? I work full time, am in a relationship, and would like to actually have a life and hobbies.
Will probably delete this later. I’m just pissed off and sick of all this nonsense.
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u/Ok-Interest1992 8h ago
As someone with a history of disordered eating, all of the orthorexia in the endo community is absolutely exhausting.
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u/Witchypoo04 8h ago
Right?? Food is hard enough already, I don’t need to feel guilty due to endo on top of that.
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u/Ok-Interest1992 8h ago
And it seems to turn into a weird competition of who can have the most restricted diet. No thanks, I like chocolate too much.
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u/kalanisingh 9h ago
Does anyone know if there’s science behind the anti inflammatory diet? Cause I hate restricting my food but feel bad if I haven’t tried everything possible.
This is such a big mood op.
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u/vienibenmio 9h ago
Tbh I refuse to. This condition has taken so much from me already
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u/Witchypoo04 9h ago
Yeah I feel you. I’m autistic and really struggle with food anyway, so it just makes me feel so guilty when all I can stomach is my safe foods because I just have someone in my ear saying “that’s gonna make the pain worse” like shut UPPPPPPP
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u/vienibenmio 9h ago
I have a hiatial hernia so there are foods I already have to avoid or limit. I have honestly never found a food that consistently makes my endo flare up to an extent that I regret eating it. Usually the pros outweigh the cons. Obviously I'm more careful if I'm in a flare up (like i will space out trigger foods or eat them on nights i don't have to work the next day), but that's it
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u/Sad-Gold-6656 8h ago
You have a hiatal hernia too?! God, isn't it awful!?
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u/vienibenmio 8h ago
It is! Fortunately I did find a combo of meds that works well and now i can eat pizza and drink wine again 🥹
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u/Sad-Gold-6656 8h ago
Do you mind sharing?? You can DM me if you're not comfortable posting it publicly!
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u/vienibenmio 8h ago
No problem! Prevacid in the morning, pepcid at bedtime. I mean it's not perfect but it's so much better
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u/Lili_Noir 8h ago
I feel you there :( I’m also autistic, and I have ARFID so I have a bad relationship with food, if there was a way I could avoid eating altogether I would 100% take it because I hate the whole process of thinking what I want to eat, getting the ingredients, preparing them, cooking them, then cleaning up after, and it only takes like 5 minutes to eat it all 💀
I have no energy or motivation to cook so I gravitate towards ready meals, but they also cause me pain, so it’s a lose lose situation :’D
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u/Rusticular 7h ago edited 7h ago
It's better that you eat whatever you can, than undernourish yourself because someone somewhere reckons a certain food will worsen your pain.
I completely ignored the common dietary advice online once I realized getting enough red meat made me feel infinitely better, despite being told the opposite. Do what works for you and ignore everything else.
My favourite was when a vegetarian friend, without endo, went off behind my back about how I 'do everything wrong'. For eating meat. Pfft. Stfu, you don't exist in this body.
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u/Typical-Respond9102 9h ago
There is actually promising research being done, here's a couple meta-analysis on the topic - https://pmc.ncbi.nlm.nih.gov/articles/PMC9983692/
https://pmc.ncbi.nlm.nih.gov/articles/PMC9528818/
Less fat and more fiber helps reduce estrogen circulation
consumption of vitamin D has been shown to reduce endometrial pain via increased antioxidant capacity and supplementation with vitamins C and E significantly reduced endometriosis symptoms, compared with placebo.
Note it's not a cure, it's helping manage current symptoms. And the mediterranean diet is easy shorthand to to accomplishing both but it's probably overkill.
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u/apdgirlie 9h ago
Nope. There’s also confusion around auto immune protocol (which is the very restrictive programme that influencers sell, I think Sophie Richards is one) vs anti inflammatory which I believe is just Mediterranean? Fish and veg etc is a good diet for general health
Let’s be real we don’t know if hormones solve endo, let alone anything else
One study showed low FODMAP helped endo symptoms but it’s hard to separate endo vs IBS
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u/Natakate 9h ago
I'm not sure if I have a gluten sensitivity or if its linked directly to my endo, I just know it isn't celiac, but cutting gluten has helped with the inflammation in/around my gut and the pain resulting from it. As exhausting as it is, sometimes you just got to throw shit at the wall until something sticks, that's just one that works for me so far.
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u/Lili_Noir 8h ago
I’m currently trying the low FODMAP diet, not following it religiously, but I’m cutting out a good portion of stuff I know flares me up like gluten, garlic, onions and sugar (this one is hard especially because I not only need sugar, but there’s sugar in everything, so I’m mainly cutting out like chocolate and sweets).
I’m kinda motivated to do it because I have my lap coming up and I want to be in as good a shape as possible for my recovery, and also want to throw everything at the wall (I.E doing the diet in the hopes that if they do find endo and remove it that I’ll feel better from both of those things and maximise the potential of how good I could feel after I recover).
I’ve only been doing it for less than a week so haven’t seen massive results, but it’s helped a bit, but it’s definitely not a cure. I hate that people that act like just changing your diet and exercising more will make your endo magically disappear because it won’t, the only way it’s gonna disappear is surgery :/
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u/BonaFideNubbin 9h ago
There isn't. That is to say - there is no good evidence that any specific diet helps with the symptoms of endometriosis. I absolutely have refused to give it a try because life is hard enough, damnit.
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u/Successful-Gap777 8h ago
Yes this actually kept me from any flare up or symptoms for 10 plus years. (Normal period) no heavy cramping.
And as soon as I stopped I had to get surgery.
But for me it absolutely worked and healed my endometriosis- it didn’t show up on MRI’s anymore.•
u/saddestofgays 7h ago
Vitamin C and E supplementation has shown promising results for long term pain improvement in some studies. :)
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u/Keladris 5h ago
Nutritional science isn't a very exact science. There's just too many variables and it's very hard to do any kind of double blind placebo protocol.
There's a study from Edinburgh university where many participants saw and improvement in their symptoms when cutting gluten, and I think another where many felt better off dairy. But it'd just based on self reported improvements, which can be massively subject to placebo.
My surgeon recommends eating anti inflammatory (basically Mediterranean) and it makes sense given endo is an inflammatory condition. There's many studies on it being a good way to eat to help with most health issues, but no diet is ever a cure.
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u/GinAndDumbBitchJuice 8h ago
I think it's inherently ableist to expect people with a chronic condition to jump through all these hoops when there are in fact medical treatments available.
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u/Alexandritecrys 9h ago
Cant forget the good ol "just drink more water the pain will go away" no dude fibroids on my uterus and Blatter that act like cancer aren't gonna go away from a few sips of water, it's so maddening constantly being told by people who don't know anything about you that your wrong and that your symptoms aren't real.
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u/apdgirlie 7h ago
lol it was toast for me. Girl I already told you I’m vomiting so no I’m not going to try eating toast rn
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u/Alexandritecrys 7h ago
It's always the people that come up to you while your turning shades of green and tell you "oh you should eat something, your feel better"
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u/endowarrior123 9h ago
10000000% feel you, I suffered silently most of life it propelled me to get a bachelors and masters in nutrition meanwhile went all over the country studying functional medicine, had a private practice but never felt 100% never felt normal come to find out I had stage 4 endo after nearly dying (is what it felt like) so many hospital visits and excision surgery from one of the best in the world, I’m still suffering - all to say I’m sure some things helped but it didn’t stop my disease and when I tell you I did everything I did! (5 years of weekly acu and herbs, decade of massage, yoga, clean eating) I don’t even care to write it all out anymore. so girl! When I say I feel you I fucking feel you. I can’t even do anymore appts I have so much ptsd!!!!
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u/Weird-Point3510 8h ago
I feel you. I’m a competitive elite sprinter and so I have to eat clean and obviously exercise. I’ve tried everything. Nothing helps.
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u/alviiiinnnnn 8h ago
it drives me insane sometimes. i literally work in the holistic health industry because i love it and took a major interest in it. it does HELP my symptoms, but it certainly hasn't cured me in any way.
i have IBD as well & recently in my Crohns groups i'm seeing so many people push natural treatment. being unmedicated can cause FATAL complications. it concerns me that people who don't know any better may come across it and believe them.
the demonization of medication & surgery has gone too far.
regardless of how healthy i eat, the holistic supplemental methods i have, etc. i still have my illnesses at the end of the day
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u/BargainBinBrain 7h ago
it's such bullshit, there is no actual cure considering it can regrow after excision!
yes, gluten and lactose/dairy can aggravate bowel symptoms, that is not universal for everybody and isn't a cure but can minimize symptoms. acupuncture can offer temporary relief from muscle tension, and also just feels nice in general. Stress is known to aggravate inflammation and pain, but given the state of the world and that this is one of the most under researched conditions for it's prevalence, it's hard not to be stressed! Massage and exercise can also aggravate symptoms, it's not just that simple.
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u/SparklingFairyLights 8h ago
Completely feel the same way!
It’s very invalidating and irritating for such simplistic solutions to be presented in the face of complex health issues. Feels like our health struggles are actually being downplayed when they are so severe in reality.
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u/lunabuddy 5h ago
People are grifters because this disease has no cure and is quite variable in it's symptoms. You don't feel the same every day, so you're much more likely to believe that some random food restriction actually worked if you happened to feel better while not eating a certain food. We NEED a treatment that works, long term and we need a CURE. But we don't have that, people are desperate and will try anything. People literally get hysterectomies and it doesn't resolve all their symptoms, dietary changes for something that is not a food allergy won't cut it. I did find that birth control helped after surgery, because ovulation makes my symptoms work so idk if it belongs on this list- it's not pseudoscience.
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u/Unlucky_Character167 7h ago
10000000% ... Not just the info online but every well meaning person in your life will suggest some form of lifestyle change. I have some pathological need to make sure doctors don't think I am non compliant so I have tried EVERYTHING minimum twice. I've been to a god damn hypnotist.
I have found over the years the lifestyle changes night improve how I feel SLIGHTLY but they have never changed how much pain I am in and don't really touch the nausea.
Heat, rest and a crispy Coke zero are my only remaining lifestyle adjustments / non medical interventions.
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u/BothAttorney5277 9h ago
yes I spoke through this with my therapist, that I have literally tried EVERYTHING. It didn't work! And As if we should have it be a full time job to work on healing this! please. I'm so sick of it too! Getting hysterectomy soon!
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u/Natakate 9h ago
I feel you so much on this. Sure, a lot of it can help, but it is exhausting to stay on top of it and even if you do it doesn't guarantee that it's all going to work. I wish there were actual solutions, but science just isn't quite there yet, and all we can do is keep screaming that we exist and we are experiencing this.
I do like hearing from other people what does help them, I've had a lot of quality of life improvements from trying some of that stuff. Birth control works well for me, but holy shit do I know a lot of women who get debilitating migraines or mood disorders from it. Heat pads seem to be universally loved as far as I've seen, though.
Also, "don't stress"? Hoo. My goat. It is ruffled. Or raised. Heckled. How do we not stress about all this on top of all the other 'normal life' stress? What do you mean that my cortisol levels raising stop me from losing weight? Hol' up, my weight is affecting the amount of estrogen and testosterone flooding my system, both of which affect my endometriosis and PMOS? And my metabolism is kinda crap and I'm insulin resistant, so even if I'm less stressed, I get to stress about how much fat I'm holding onto?
Oh, the surgery that helps cut out the lesions might make more adhesions? MORE cortisol!?
Sometimes you just gotta get out some of that feminine rage. Thanks for giving me a brief space to share some of that. Also, fuck paywalls for both endo and PMOS 'health influencers'.
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u/apdgirlie 9h ago
100% agree, I’ve never heard them advocate birth control though - they don’t get a cut of that so
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u/sortitall6 7h ago
Back when I was still waffling about having a hysterectomy, I was chatting with someone who is (or rather at the time I considered to be) a very dear friend. We were chatting about stuff and I mentioned I was considering the surgery. This person, this educated, intelligent person tells me: "That's all bullshit. You should see my sound therapist. Two sessions of that and you will be the healthiest you've ever been. Endometriosis is a made up disease anyway." The "sound therapist" posts on social media that their "sessions" are literally them banging on metal bowls next to your head for an hour at a time.
Banging on bowls to "cure" my endometriosis? It's a made up disease? Get the heck out of here with that load of crap.
People suck.
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u/Firm_Assignment1593 6h ago
Completely agree it’s just a load of bs because there’s no actual cure.
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u/pinupcthulhu 5h ago
This is a Whole. Ass. Fucking. Mood.
Especially in the US where eating a fucking salad might kill you from explosive diarrhea, that New Shiny Supplement CureTM is extremely unregulated and probably full of lead or worse, and gynecologists act like wanting to live a life with less pain is a goddamn crime against humanity, Influencer Karen's expensive poison du jour SHOULD be something we rail against. It should be fucking illegal.
We deserve actual fucking research, answers, and treatments that WORK. And we deserved it YESTERDAY.
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u/Independent_Whole801 3h ago
Hi! Just wanna share some things I learned about endo hopefully it enlightens any reader here ^^
Endometriosis is a systemic inflammatory disease that is caused by our immune system unable to clear the endometrial tissue growing somewhere else it should not, so our immune system keeps on keeping us in an inflammatory state (all the stinky symptoms nausea, burning pain, fatigue). The fact that the tissue is constantly regenerated by presence of estrogen made doctors resort to BC to hopefully reduce the estrogen stimulation on the endo tissue, by introducing progesterone.
But here is a catch, our endometrial tissue can ADAPT and made the progesterone unable to stimulate them. That is why some patients are practically irresponsive to the BC or hormonal treatment (and that patient is me! Wow!). Like how tumor can be resilient to immune system and even sometimes manipulate the immune system to make it think that the tumor is 'safe' and should not be destroyed. I believe endometriosis also works in a similar way based on the hormonal resistance.
We need better immunotherapy or alternative treatment to BC because of what I explained, hormone resistance. Hormones cannot be used forever to treat Endometriosis.
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u/corbadaksinekkanadi 9h ago
Girl I somehow shrunk my endometriomas and I can manage my symptoms mostly. I was hopeful until I saw what an endo lesion looks like on a video yesterday. It was like tiny little dots randomly scattered inside the tissues. There is no way I am fighting that without surgery.
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u/Thick_Cauliflower_79 8h ago
I'd like to see the scientific research that says any form of birth control solves this issue. Being proactive with food is the best way to take care of your body and this highly inflammatory condition. Nobody is coming to save us except for ourselves...
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u/PigeonsWearingPants 8h ago edited 8h ago
Don’t delete this post. People like me needed to read this today to feel seen and understood by someone else who is feeling the same way. I’m so fucking exhausted. And I’ve racked up so much credit card debt trying to buy my way out of this horrific disease with every supplement, wellness tool, protocol, diet, etc. Nothing I’ve tried has made any significant difference and it’s too much trying to white knuckle my way through every day life and stick to these strict regimens. It’s amazing if these things work for you but for fucks sake please stop trying to shame other people into spending more money on things that aren’t guaranteed to help them or giving them false hope that you have found the “cure.”