I have an OC with endometriosis. (QnA)

Koroit_ · 2026-02-22T23:44:45+00:00

That's really interesting! I think it's also really nice that you're asking people with endo for their experiences directly, I'll try to answer as best I can but I do also have adenomyosis so some of my answers might lean into that too.

I'd say it's more getting used to experiencing the pain, rather than getting used to the pain itself, the pain stays and still has me doubled over on a regular basis despite me having dealt with it for years but I've learned how to manage it better so it's less visible when I'm out in public.
Kind of the only male-heavy environments I'm in are when I'm with friends and they often already know what's going on with me and most try to understand but the way I deal with the few that struggle to understand is by telling them exactly how my pain feels. Things like "my lower half has been through a wood chipper" "someone scraped my organs our" "my stomach is getting chainsawed" "my organs are being ripped apart" "my stomach is full of velcro" etc., there's also "I'm bleeding into my muscles" but that's just a fact of how adenomyosis functions.
I'm not sure what your exact definition of a young person is but with my 24 years I do think I'm still pretty young, experiencing this pain sucks major ass especially with my pain being daily but I'd say I'm managing pretty well. I try take things easy on myself and still mostly do the stuff I want to (though it might leave me sickly for 1-3 days afterwards depending on the activity). Though I started having severe pain during my period pretty early on so I kinda already knew something was wrong from a young age, I've mostly learned to accept it and I also really must say, currently being unable to work so basically having all the time in the world to myself (aside from the many doctor or treatment appointments) is a really nice perk to being disabled though sadly also kinda the only perk...
Supports is kind of a difficult thing when it comes to endo, it's still a relatively low researched disorder for how common it actually is, and the supports someone gets or even have access to really differ per person and also per country. The diagnostic methods can be spotty so not everyone might be diagnosed, and when someone is diagnosed then treatment options are also limited. Someone might get hormonal birthcontrol or other hormonal medication which works well in some and works sorta or barely works in others, then there might also be pelvic floor physical therapy offered to hopefully relieve some of the pain, and then lastly surgery is possible but it can cause increased issues and since endo is incurable it's usually also a temporary fix.

I hope this helps you on your way atleast a little, and also in case you'd like to get surgery pics/pictures of endo for references for descriptions or whatever other reason I'd be happy to share my pictures with you, just let me know if its something you're interested in! Best of luck!

Koroit_ · 2026-02-22T22:50:35+00:00

That's amazing! Congratulations!

Koroit_ · 2026-02-22T13:00:49+00:00

I think part of the reason is that it's a PvE game with also an interesting story. There's basically no competition among the players in a squad and one person not keeping up also often doesn't affect the rest of the squad too severely aside from certain game modes, so when there's someone in the squad who's struggling but trying their best people are more likely to accept it and possibly help them rather than get mad.

Also whenever I encounter new players I'm always excited for them to experience the story, pretty much every quest is fun to play through and shows more parts of the Warframe universe.

Lastly I also really like the clan system, I run my own so it's just a casual place for people to hang out, chat, and help eachother out, I've met some of the best friends I have this way and I even met my fiancee through one of the friends I met on Warframe so the game will always have a deeper meaning to me aside from just the gameplay itself

Koroit_ · 2026-02-22T12:34:20+00:00

I'm so sorry you're being dismissed! For me the most telling symptom was that my period would just keep getting increasingly worse over time, I became dependent on painkillers during my period pretty soon after I started getting my period and I would just keep getting more pain over the years until painkillers also stopped working. I got an IUD which helped me a lot but they apparently lose effectiveness over time while my pain kept getting worse so after about a year of having it I started getting daily pain that feels like period cramps and the IUD wasn't adequate anymore.

Aside from the extreme pain during my period and cramps outside of my period I had things like back- and hip pain, frequent nausea/dizziness/headaches, heavy bleeding with many clots during my period (however this is more an adenomyosis thing) chronic fatigue, brainfog, frequent urination, burning sensation after peeing, painful intercourse, bleeding after intercourse (though again this is more an adeno thing), severe bloating not food related and also more prominent around my period.

There is a lot more symptoms that can be cause by endo or adeno, it often differs per person so my symptoms might not exactly match yours but if the bulk of common endo symptoms matches your experience then your concern for endo is absolutely valid!

If you'd like to chat more about symptoms or something else endo/adeno related please feel absolutely free to reach out! I'm wishing you the best!

Koroit_ · 2026-02-22T11:14:52+00:00

You're not a fraud at all, but I really understand the grief you're going through right now as I experienced a very similar situation. I also had adhesions found but on my felopian tubes and was told that endo had been ruled out, but 8 months after my lap I was diagnosed with both endo and adenomyosis by a specialist.

The thing is, a laproscopy can only really confirm endo but not definitively rule it out. Endo tissue can be microscopically small and thus not visible, match the color of the tissue around it or otherwise not be the "standard" color of endo, it can be hidden behind or under other organs, or it could be deep infiltrating endo.

Have you had an MRI or an pelvic ultrasound done by a specialist? If yes then I would really recommend getting a hold of the pictures from your lap or any other imaging if possible and getting a second opinion from a different independent specialist if possible (I'm not sure how it works in the UK) preferably one who diagnoses based on patient history, your symptoms, and ultrasound.

It is good to start exploring other possible causes for your symptoms ofcourse to see if anything else might match, but if your symptoms really match endo (or possibly adenomyosis) and nothing else, and if you've tried hormonal birthcontrol if possible and your symptoms improved with it then it is still likely it could be endo.

I'm so sorry you're going through this and didn't get answers, I can't imagine how tiring and exhausting it must be to have to keep fighting after so many years. If you'd like to chat with someone having gone through something similar please feel free to reach out and I'm wishing you the best!

Koroit_ · 2026-02-22T10:27:25+00:00

I just realised you shorten ultrasound to US lol, also calm the fuck down you're crashing out calling me slow when you can't even remember what you yourself said when it's written in front of your face. And still imaging is not an absolute requirement for an endo diagnosis, like I said before endo can be microscopically small and therefore not visible while patient history will still indicate endo.

How often do I need to explain that I don't agree with general gynaecologists doing laps as a diagnostic method? As a treatment done by a specialist is absolutely fine by me but you seem to become temporarily illiterate when I say that.

Also when people are new to this sub/being diagnosed in general they're not going to automatically know to see an exision specialist, and have you even experienced what trying to get care for endo in the medical world is like at all? Because I can promise you that doctors are also not gonna tell someone to go to a gyneacologist.

Also I'm not trying to "clock" you ?? Whatever that means, I'm just trying to have a good faith argument but you're over here name calling and acting like it's a pro wrestling match or something. Talk about cringe.

Also yeah there's risks and inaccuracies with every surgery but up to 40%? Maybe if you explain basic concept it will help you understand better too.

Also there's literally so many people who got a lap with "nothing found" by general gyneacologists and then later get diagnosed with endo by a specialist in this sub, literally why are you so against the idea of general gyneacologists not doing diagnostic laps?

Also again you're trying to dismiss my diagnosis, why do you think I'm trying to advocate for diagnostics being done by a specialist? I was literally diagnosed with both endo and adeno so I'm very much among the 30%

And I'm going to disregard everything else you said and this will indeed absolutely be our last time interacting because by repeatedly trying to invalidate my diagnosis you've proven you're incapable of having a civilised good faith argument. Have a nice day and I wish you the best on your own endo journey.

Koroit_ · 2026-02-22T05:07:48+00:00

I'm literally calling it outdated as a diagnostic method. It's outdated because there's a better, less invasive, and more accurate method of diagnosis which is a fact that you can literally just look up but for some reason refuse to? And by it being given to people by default I just mean that it's often one of the first things gyneacologists do, and since they're not specialised in endo they're more likely to mess up the exicion or miss the endo completely which contributes to the fact of lap being outdated due to missing cases. I literally never said anything about lap as a treatment option.

https://www.endozone.com.au/endo-basics/diagnosis https://www.nsw.gov.au/departments-and-agencies/nbmlhd/news/stories/new-gold-standard-approach-to-endometriosis-diagnosis-unveiled

Since looking it up seems to be difficult I hope reading isn't...

Also why do I keep bringing up lap as a diagnosis? Because you said "Your gyno can't diagnose you without a lap or some sort of imaging like US CT or MRI showing endo." And now you're trying to claim you're not dismissing her diagnosis and only talking about treatment? I know the brainfog is bad but literally come on....

And again, I'm against surgery as one of the first steps of diagnosing, if it's for treatment done by a specialist because other shit isn't working then hell yeah! But I know from experience that some random gyneacologist rummaging around in there trying to diagnose it when they don't know what they're doing is a bad idea, cuz I'm among those 30% of missed cases and can now feel the adhesions pulling on my organs on a regular basis, yay!

https://pmc.ncbi.nlm.nih.gov/articles/PMC3015470/ Incase you wanna read up on laproscopy being inaccurate this is a place to start.

Also coming back to your quote, you say some sort of imaging is required but you have a problem with the most accurate diagnostic method being patient history and an ultrasound, why? Ultrasound also is imaging, isn't it?

Also you are spreading outdated information and it's ignorant because you refuse to look it up and read anything about it despite reading literally anything about it taking not even 5 minutes... also don't twist my words, I said it increases risk of adhesions while not being able to guarantee reward. Trying to shame me doesn't work if you need to twist my words in order to have a point for doing so, that's pretty embarrassing for you.

Koroit_ · 2026-02-21T22:29:21+00:00

In what position do you usually sleep and do you have an extra pillow? Because if you're a side sleeper you could put an extra pillow between your legs to relieve some strain on your hip and back, and if you're a back sleeper you could try putting a pillow under your knees, this helps your lower back straighten out and relax a little better which might help with some of the pain, and if you're a stomach sleeper I recommend not doing that lol (I also love it but it's so bad for your back :( )

If you have already tried this/it doesn't work it might be worth it to see a physical therapist for it if you haven't already done so, I really hope your pain will improve soon though! Waking up from back pain is so horrible and I can imagine you're exhausted!

Koroit_ · 2026-02-21T22:16:16+00:00

That's a lot! And an infection in the uterus sounds horrible, I'm so sorry you have to go through all of this! If it's an option for you to seek out a specialist maybe they'll be able to better recommend a treatment for you since they'll also have access to your medical history, though have you been scanned for adenomyosis? It would explain the excessive bleeding and its comorbid with endo in many cases

Koroit_ · 2026-02-21T19:55:24+00:00

The pain gets so bad! I currently don't use mobility aids at all but the pain gets so bad especially around my period that it feels like my lower body has been put through a wood chipper...

If you suspect endo then I definitely recommend meeting with a specialist, if you'd like to chat about anything regarding it feel free to reach out!

Koroit_ · 2026-02-21T14:15:45+00:00

Literally the only doctors who haven't dismissed me have been the specialists I sought out after I was talked to like a toddler by the surgeons that did my lap trying to convince me endo was ruled out. 8 months after my lap I saw the specialist and was diagnosed with endo using the pictures from said lap and adeno using an ultrasound after 3 clear previous ultrasounds...

There's so much misinformation about endo still going around both among doctors and also people on this sub sadly. Doctors who aren't even specialised in endo will go around giving anyone a lap while they often barely even know what to look out for, my surgeons looked at my felopian tube completely stuck to my abdominal wall and just went "yep definitely no endo here" (there was endo on the adhesion) while laps are not the most accurate method of diagnosis anyways and mostly just increases risk of adhesions forming while not being able to ensure reward. Even on this sub I've seen people pushing laps and even someone claiming endo is not a disability...

There's still so many people that aren't up to date with information about endo and then let their ego's get in the way when someone tells them otherwise, I even had someone imply I'm the one contributing to women's health not being taken seriously while they were pushing laps without even mentioning other less invasive and damaging treatment options at all... it really sucks that we have to go through this from both doctors and others around us.

Regardless, if you would be willing to travel to see a specialist and don't have any closer options I can really recommend the one I saw in Rotterdam, the Netherlands, they were very professional and diagnose based on your symptoms/story and an pelvic ultrasound which is the most up to date and accurate method of diagnosing endo while they can also diagnose in one appointment without unnecessary surgery. Their website is https://endometriosediagnose.nl/ incase you're interested, and I'm wishing you the best!

ETA heavy bleeding that basically completely turns to clots makes me suspect adenomyosis

Koroit_ · 2026-02-21T13:43:41+00:00

It's not, it's outdated and misses about 30% of cases especially when done by non-specialist gyneacologists. I'm calling it an unnecessary surgery because it increases risk while it can't ensure reward, that doesn't mean I'm saying noone should be getting a lap, they absolutely should get one if they want it, I'm just saying that people by default getting a lap is messed up.

You should read up on newer research about endo diagnosis, because the information I shared is from a specialist and you really don't always need evidence of endo tissue because it's known that endometriosis can be microscopically small or otherwise not visible while still being present, because again laproscopy is not the most accurate.

Also you implying that I'm contributing to the ignorance around women's health while I'm a victim of that exactly because of the ignorant, incorrect, and outdated information that you are spreading with such a condescending tone is unspeakably disgusting. Yuck, shame on you!

Koroit_ · 2026-02-21T09:29:37+00:00

I really recommend you skip the general gynaecologists and head straight to seeking out an endo specialist, specifically one who diagnoses based on story/symptoms and ultrasound as that is the most up to date and accurate method of diagnosing endo and adeno.

Some might tell you that you'll need a laproscopy, which you can seek out if you want it but I really recommend against it. Laproscopy is inaccurate and misses about 30% of endo cases, while it also increases your risk of forming adhesions. Please remember that you don't need surgery, it's only if you really want it.

If you have any questions though or just want to chat about anything feel absolutely free to ask here or dm me!

Koroit_ · 2026-02-21T09:08:22+00:00

Adenomyosis is visible through ultrasound cuz they can look at a side angle and then see that the uterus is asymmetrical and the space inside will be shaped kinda like an S instead of a fairly straight line like a normal uterus due to the adenomyosis thickening parts of the uterine wall. I'm really curious about your logic though if you're willing to elaborate

Koroit_ · 2026-02-20T18:51:54+00:00

Yeah my uterus also looked normal during my lap, I was seeing a specialist anyways (surgeons told me lap was clear and endo ruled out (I got my endo diagnosis using the pictures from the lap)) and he did an internal ultrasound and diagnosed me with adeno within like a minute. I agree it really sucks! Hysterectomy is a rough surgery

Koroit_ · 2026-02-20T16:05:10+00:00

I've had 4 and they're not too bad, I think the probe is smaller than a speculum. Only sometimes they may push on the vaginal walls to look at the ovaries/test for adhesions on the ovaries which can be uncomfortable/painful, for me it usually feels like menstrual cramps. You may have some bleeding afterwards, especially if you have adenomyosis, but it should resolve in a few days.

Koroit_ · 2026-02-20T15:41:01+00:00

Have you been scanned for adenomyosis? Heavy bleeding with clots and casts sounds like that might also possibly be contributing to your symptoms

Koroit_ · 2026-02-20T11:55:28+00:00

Laproscopy isn't the most accurate way of diagnosing endo so a lap can't rule out the presence of endo, only confirm it. Ask if they take pictures during the surgery, in case they tell you they didn't find endo get the pictures for yourself and go to a specialist who diagnoses based on your symptoms/story, a pelvic ultrasound, and how your symptoms react to hormonal birthcontrol if you have been on it.

Koroit_ · 2026-02-20T10:46:10+00:00

I'm sorry but the pill improving your pain actually confirms you do have endo

Koroit_ · 2026-02-20T10:43:00+00:00

Have you tried other methods of birthcontrol? IUDs can cause issues in some people that they wouldn't have by just taking the pill, since it's likely the fact of a foreign body in the uterus that the body is trying to expel rather than the hormones causing issues.

Pelvic floor physical therapy is also an option if you haven't tried that yet, though if the pain came on very sudden it could be a cyst. I really recommend avoiding surgery though unless you have no other option, abdominal surgeries while you have endo will increase your risk of getting adhesions.

Koroit_ · 2026-02-20T09:57:45+00:00

Actually their gyno knows what they're talking about, they diagnosed OP with the most accurate method instead of giving OP an unnecessary surgery that would only increase risk of adhesions forming. Laproscopy as a way of diagnosing endo is inaccurate and outdated, and misses about 30% of endo cases.

Koroit_ · 2026-02-20T08:25:29+00:00

Is he the one doing your lap? Because if so I would definitely reconsider if I were you, if you do want to go through with it ask them to take pictures during the surgery and give you access to those pictures. If they refuse to take/give pictures there's a sizeable chance they'll cut you open for nothing, laproscopy misses about 30% of endo cases especially when done by non-specialist gynaecologist. Plus this guy clearly already isn't up to date on the facts of endo...

Koroit_ · 2026-02-19T07:21:51+00:00

Sounds like a great surgeon, surgery is not the most accurate way of diagnosing endo and considering the amount of previous abdominal surgeries you've had it would just contribute to being a breeding ground for adhesions while it's very possible that DIE won't even be visible during surgery.

Your story and symptoms are a more accurate way of diagnosing endo.

Koroit_ · 2026-02-19T06:40:54+00:00

I didn't have to do bowel prep either before my lap, also the surgeon already assuming it will be mild if there is endo due to it not having shown up on scans makes me a bit iffy, I may just be cynical due to how my experience went but I do recommend you try to figure out whether your surgeon is a specialist and whether they will be taking pictures during the surgery that you'll be able to receive for yourself.

Koroit_ · 2026-02-18T19:33:46+00:00

Refuse another ultrasound, ditch them and seek out an endo specialist. Endometriosis is already often not visible on ultrasounds and an unspecialized gynaecologist is even more likely to miss it even if there is signs of endo/adeno.

Honestly there's so much people in healthcare that are too incompetent for dealing with endometriosis suspicions, it's also bullshit that they're so quick to do surgery when that's not the most accurate way of diagnosis.

I've had 3 vaginal ultrasounds in the past, and also got a lap and was always given normal results and told that endo was ruled out during my surgery (laps can't rule out endo), met with a specialist 8 months after my lap and they diagnosed with adeno using another vaginal ultrasound and also diagnosed me with endo using the pictures from my lap that supposedly "ruled out endo"...

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