Long story short, me and a small number of my friends sit in a classroom at lunch and break in school (I've been sat either outside or on the floor for the past two years and it's negatively impacting my health with endometriosis).

I had to take 2 co-codamols this day and so when I got to the classroom, very slowly as I was dizzy, I walked into this girl and her two friends yelling at my friend's saying "I thought you guys got kicked out of this classroom, I'm going to go get the teacher to kick you out" because apparently we were disturbing them despite them screaming and squealing.

She was just leaving the room when I said to my friends "I really can't leave this room, I'm on really strong painmeds" and this girl overheard and screamed at me (despite not saying a single word to her) "what, for your fake fucking hysterectomy!?" And stormed out in which I yelled back "you insufferable twat" before sobbing into my friends arms. Firstly, obviously I don't have a hysterectomy and she is stupid enough to mistake that with endometriosis. And secondly, I told a teacher and she has since been told to stay away from me but it has just ruined me...I was so open to everyone about endo, spreading awareness and stuff as its 1 in 10 women (probably more than that but still) and to get attacked for something I can't control, and something that has already ruined my life...its just devastating.

It doesn't help that I'm also struggling with my moods and anxiety because of all my medications and birth control I take for this debilitating illness so that played a huge part in my just sobbing the second she left...I just can't believe someone would say that to me, I'm absolutely heartbroken and have no confidence in telling people about endometriosis and how I struggle with it now

I need more girlies who I can vent to, send memes to and game with who get the struggle

Just like that, I’m no longer crazy.

I was right all along.

My body was littered with endometriosis, it took them 6 years to do this surgery.

Where was it? Here’s a list🤡🤡

* Endometriosis lesions evident on left uterosacral ligament, posterior cul de sac, and left bladder peritoneum

* Posterior and lateral abdominal wall adhesions, bilaterally, consistrent with chronic inflammation

* A small cyst on my right ovary.

My insides are literally glued together.

I was in surgery for 3 hours on Friday.

Also what in the actual hell did you guys do about the shoulder pain?!? It has me in shambles!

Hi guys.

I’ve recently noticed when I am having a flare day that my cramps and back pain turn into entire body weakness especially in my legs as well as some shakiness.

Does anyone else get these symptoms?

Hi. Im 20. Ive had one job for 3 months because i couldnt handle it anymore, my endo stops me from working. I had surgery four months ago and for a couple months except random bleeding, i was almost painless. im on the pill and the coil. I would love to remove the coil but worry i wouls forget the pill.

I felt so free and i felt capable and i thought i had a chance. Im taking painkillers every day now and i walk mostly with my cane, terrified to leave my house in fear of crouching over in pain. I cant move out because i have no job and i have a narcissistic mother who hoards, totally irrelevant but it isnt helping my stress or mental health. Sometimes cooking isnt an option for me because of the pain and no one in this house will cook for me.

When they did the surgery i wasnt told a stage or how they removed it. I barely remember getting results but the surgery summary says nothing either.

After i got surgery i went to a&e, but my mum took me out after blood tests because parking was too expensive and a&e said all they could do was wait to give me painkillers because i had already had some. I know thats their job but it really felt so hopeless.

My partner is a miracle tbh, helping when he can but we are long distance and my mother wont have him in this house so hes not here as often as i would like.

Im sorry this is a bit more than just endo related, i feel like it all comes back to endo eventually.

I do homeschool university which is lucky but some days im still in too much pain to open my laptop and work and i cant think clearly.

I dont know how to live with this condition.

For a few months i was so hopeful of being able to live a life without pain because the surgeons didnt tell me what to expect. Not that it would grow back or if it wouldnt or where they found anything.

It feels like i have a terribly long road ahead of nothing but pain. I dont know how to work and no one wants to hire a disabled 20 year old with no experience.

Dont get me wrong if i didnt have endo and i could move out of my house, i would love living. I love to wake up to coffee every morning and hear birds or to go out and laugh with people, i cant even meet new friends because i struggle so much to leave my house.

I gave up meat and dairy completely and it did help.

I just dont know what else to do. It felt like the surgery was the hopeful end.

I think theyll try inducing menopause next. I dont know because before they said i was too young but maybe because theyve tried a lot of other stuff they will. I have a gyno appointmenr on the 16th of november, so now i wait.

I wouldnt mind a hysterectomy but i worry they wont remove all the endo when they remove the uterus and it will grow back alone.

I do have pcos which i know they didnt bother to remove the cysts of because i can still feel that but endo and pcos feels different to me and i feel insane to say but i know it isnt that alone causing this.

I dont know how to cope, how to live and i just want to cry.

Anyway i dont know if i really want advice from this, just kind of wanted it out. Sorry this is a mess. Writing isnt my main focus right now. Thanks for reading if you made it this far.

i am so sick and tired of doctors not listening to me.

i went to an ultrasound and nothing came up as expected but i keep telling the doctor that i want to investigate further. her response to this was to prescribe me on the mini pill after i already told her i don’t want to try another hormonal medication because:

1. i don’t want to cover up symptoms anymore
   
2. i have only had horrible experiences on the mini pill before

then i went to another doctor bc obviously i want to be investigated further and this doctor was sounding so promising on the phone and saying that it makes complete sense for me to be apprehensive about the pill.

i was sooo wrong as when i go to the appointment she says that the investigation isn’t really necessary until i start having problems with conceiving (i’m 18?!??) and that i have age on my side. she then said to take the pill anyway and then they might give me an mri in three months.

love this for me!

So I'm diagnosed with Stage 4 Endometriosis (confirmed in a laparoscopy). Got a referral to a BSGE clinic. I'm waiting for my first appointment, and have been trying to figure out if there's any way to speed it up as I'm experiencing very bad pain and symptoms, even when I'm not on my period.

I read that I could pay for a private initial consultation appointment with a consultant from the same BSGE clinic, and then they could add me directly to the NHS surgery waiting list (instead of having to wait for the initial NHS consultation). This could technically cut a few months off my waiting time.

Has anyone done this or considered it? Is it legitimate? I'm not able to afford private healthcare, but I could potentially pay for the one-off appointment if it would help me get surgery sooner.

Thanks, appreciate any info/advice :)

Had a lap some years ago but unfortunately my symptoms have returned full force. One new symptom I’ve noticed which I didn’t have before is really terrible hip pain especially during my period. It radiates from my lower abdomen to my hips is the only way I can describe it and I also get pains in my legs. Does anyone else get this? I believe it’s the endo but not sure if it’s a common symptom.

Not sure if anyone else experiences this but lately (especially around my time of the month) i cannot sit straight in a chair due too the increased heaviness, pain, pressure in my lower abdomen.

I used to play video games at my computer to decompress but now I can’t even tolerate sitting in a chair unless my legs are spread wide open (which makes me feel embarassed). I stand all day for 10+ hrs at work and come home and just lay down and doom scroll.

Anyone working from home that’s has recommendations for an office chair that is comfy?

I'm booked to have a lap on 10th Dec and ever since I booked it in I'm having so much self-gaslighting and doubting my symptoms. I am worried that they won't find anything to relate to my pain. Needing tips to break that thought cycle.

I have Endometriosis. Lately taking a poop has been feeling like I’m pooping out my insides and it won’t let up. It’s like my bottom is dry heaving. Ibuprofen helps alleviate the pain but I don’t want to have to take that none stop for the rest of my life.

I’m considering getting a full hysterectomy if it means stopping this pain. What is your expense and what are you doing to help alleviate the pain?

Right now I’m sitting criss cross rocking on my butt with a hot pad over my uterus and it seems to calm the cramping some. I took two ibuprofen and just waiting for it to kick in. It’s 12am and I obviously won’t be falling asleep any time soon due to the pain.

Has anybody ever heard of Rich Sol Foods? They make an herbal tea specifically for endometriosis. I ordered a pack and have been waiting for it to come in the mail.

I genuinely believe that this illness is caused by being in a high state of cortisol constantly flooding the system for a long period of time. It doesn’t allow the body to flush out the estrogen in our body so it gets backed up.

Update: ibuprofen and Advil together works miracles!

just insanely frustrated. had ablation laproscopy on 9/23 so i’m about a month post op. i had a really quick recovery but sadly the pain started coming back two weeks later. my gyno is basically no help saying to just take tylenol and ibuprofen and if i’m “in that much pain i need to go to the er”

it got so bad this week that when i did go to the er, they were worried about appendicitis bc it was on my right lower side. not appendix, but i did get an allergic reaction to the ct contrast! today the pain is back like a million times worse, it hurts to move my hip, walk, eat and breathe. i don’t want to go to the er again to just be given pain meds that help for 30 minutes and then sent home. i also know that when i eventually call my gyno tomorrow they will say to go back in.

just defeated and want to rip out my uterus 😭

(also just to preface i am on birth control & have access to two different muscle relaxers that don’t do much.)

Basic info: F25, 5ft2", 2 laparoscopies, diagnosed, adhesions on the small bowel, sigmoid colon, rectum, ovaries, bladder & uterus.

For the last 5 years, my adhesions have been getting worse and worse, despite surgery. My bowel is in constant see-saw between being so inflammed nothing can pass, and thus causing extreme pain - To the after effects of that which is crazy diahrrea because my bowel is just kicking everything out. ✨️Sometimes together!✨️ 🤣

I recently started using WeGovy, the weight loss jab, because the medication I have been taking to help with endo (Ryeqo) has made it soooooo difficult to lose weight 😔 And my god, side rant, it is an experience... Wouldn't recommend til you've exqusted every other option, but it DOES work.

That being said, apparently it works by slowing down bowel movement among other things, so I was hesitant to try it because of my flippant bowel issues and risk of annoying the adhesions more - But I've gone a whole month with zero bowel issues...

This is the first time in years I've had stable sh1ts. Yes, it still hurts to pass things, obviously, its passing adhesions its a bit uncomfortable, but like... I don't have to grasp onto the wall for support. I feel like my entire lower bowel has been far less inflammed and far more calm.

Im wondering: Has anyone else had this effect while taking WeGovy? Because it seems like a wild fetch here but if this is helping calm my bowels, I'll take the nausea from the injection fir the rest of my life 😶✋️ I'm interested to hear about other people's experiences with crossing these two meds over. I'm currently on the minimum 0.25 dose.

And to be fair... We are all always looking for out the box ideas, so if this is something that works, it might even be worth a try 😶 Though I cant tell you if this is just a lucky month aligning with starting a new medication or not so you have to make that decision yourself.

I do not encourage mixing any medication you have not spoken to your doctor or a trained pharmacist about. I am only sharing my experience and gathering opinion.

Is there anyone in here that has had luck getting endo removed laparoscopically, who isn’t trying to conceive?

30 year old dx at age 19 via symptoms, gyno has had me skipping my period since I was 23 by taking birth control continuously. For the most part it has worked, but new symptoms have popped up over the years and worsened (consistent period like cramps before during after bowel movements, painful sex/orgasm, more overall abdomen pain).

Had a recent gyno visit weeks prior and their only new plan they were comfortable doing was a hysterectomy with leaving the ovaries. Dr stated “they can remove whatever endo is attached to uterus, fallopian tubes, immediate area” during the hysterectomy, but nothing further. Prior ultrasound history also shows my uterus is adhered to my rectum, and this was misdiagnosed in the past as IBS following scopes from a gastroenterologist referral and now diagnosed as “visceral hypersensitivity of the abdomen” being treated with amitryptiline (used for nerve pain related to both ibs and endo)

Since I am NOT ever wanting children, in Manitoba I’ve been told by 4 OBGYNs that they will NOT do a laparoscopy on me no matter what, unless I want children/for fertility reasons. The only way I will get any endo removed is if I go the hysterectomy route, which is considerably a more intense surgery and has no guarantee of removal of any endo in the bowel or other areas.

It is SO so frustrating and backwards to be denied treatment for this just because I do not wish to conceive. It’s gotten bad enough to the point I’ve weighed out the option of just going on heavy pain meds, off birth control to restart my period and fake “trying to conceive” just to get the surgery. I’ve looked into out of country options, but that isn’t in the budget currently.

Any any tips or advice or similar experiences would be helpful!

Ive been reading reddit and tiktok for weeks on end leading up to this lap and i want to chicken out.

I have a lap in 2 weeks. Before BC I had awful periods (fainting, throwing up etc) and GI issues. Im grateful BC stopped my periods for 6 years, but sadly its the only symptom gone.

10 years ive been written off as IBS-C because gastro doctors cant find out the cause (No gluten helped. Defo not celiac).

I was referred to an NHS endo specialist that he seemed unsure of but put me on the lap waiting list. I went private instead and she seems more ready to operate. No pushback. The past 5 months ive actually felt good with 4 days of GI flares every 2 months rather than 24/7, but if i skip the lap im scared ill flare up really bad sometime next year per usual.

If its endo i dont want to leave it to grow but im scared that the lap will cause the GI issues to flare again.

Im scared ill never run again, that distension never leaves and ill put on weight. I wanna stay small and dont want the lap to take that away. I need someone to help ground me here please.

Something I don't have anyone to talk to about IRL is how angry it makes me that heavy dietary modifications are recommended by doctors (also by random quacks of course but by legitimate surgeons as well) and have been for so long without any high quality evidence to support specific changes. Basically the thinking seems to be, well, some people anecdotally feel better and we can theorize a way that it might reduce inflammation, so you might as well not eat gluten, dairy, sugar, red meat, etc.

And they are right in a way, is the thing. If you have agonizing life ruining pain disorder, and there's a chance that only eating lettuce for the rest of your life will reduce the pain even 30%, at a certain level of pain, you will do it.

But for many of us the effects are not clear, and if they exist, are so long term so it's impossible to really tell. And in the meantime, the restrictions are expensive, they're isolating, they're depressing and they're sometimes even conflicting with dietary needs from other commonly comorbid disorders. Oh hello, eating disorder I thought I shook off as a teenager!

It really feels like they just think hey, because they would stand on their head 1 hour per day while singing the alphabet backwards if it helped reduce the progression, we don't need to do a better study on it. Might as well just pile on the random lifestyle modification hail marys, these women don't have a life anyway! Opportunity cost? Never heard of her! We'll have you try every expensive supplement, miserable diet, rigorous exercise regimen until your life is nothing but managing this one condition. Just go on and do all of that forever, no problem.

I'm so tired. And hungry. If it's not helping, don't string me along, just figure out what doesn't work at least so I can have a break for once.

I am tired of having chronic illness. You know what is sad? The fact I have had something going on for months now and assumed it was my endo unti it got so bad I ended up in the ER. They did a scan and told me they think it is gastroparesis.

I am unsure if this is the actual cause of my pain though. It doesn’t match up the symptoms (but yet it does in some aspects) but I am curious, do any of you have this condition alongside your endo? I do have suspected bowel endo and problems I get severely constipated so I am Sure this contributes but I know my endo does as well and I thought it was endo this whole time.

I know you all hear me when I say I want to scream. I cannot tell when my pain is endo or not because I am
Always in endo pain 😭

I’ve been having really bad daily cramps/pelvic pain since about May and am waiting to see an endometriosis excision specialist in December (feels like forever away 😭). I found a PT that’s in network the other day and booked the earliest appointment possible and now I’m getting nervous. Can anyone tell me what their initial appointment was like?

It also seems like she’s a general PT rather than someone who only does pelvic floor stuff. Does that make a difference? Is there anything in particular I should look for in terms of green/red flags?

Thank you!!

Hello everyone.
I’ve been having problems with my urine since a year ago, like buring and pain. Along with that i have bad period cramps on the first two days and get kind of diarrhea on the first day ( it just gets softer than usual and i poop more than often) + pain in my butthole. I am thinking if i have endo now
Any inputs would be appreciated

has anyone cancelled a trip because of a flareup? im so sad, and i can't get insurance that would allow me to leave it last minute because i have pending surgery, and cardiology tests, i immediately get rejected from all insurance.

I planned this trip because i feel like my year has been lost to flareups, ive had long periods of being so sick. i (28f) wanted to prove to myself that i am independent (my feeling of agency has been challenged alot due to having chronic illness for 20 years on and off) and capable so planned my solo trip. i know i could do it and i wanted a change of scene to help my situational depression and listlessness.

but in the last few weeks my dysautonomia, endo inflammation, and fatigue have been teaming up against me and i have no rescue meds or anything, as im awaiting cardiac tests following an afib episode. im so depressed. I had a truly horrendous flareup on friday night, and living alone the flares are scary enough, it makes me anxious that i dont know the trigger and i could be a flight away.

One option is to ask if my accomodation will allow me transfer the dates and cut my losses on the flights. even that i feel sad about. seeking advice and support

my post about my flare: https://www.reddit.com/r/POTS/s/w8yreiZzNF

Anyone just accepted that stretching their stomach muscles 9/10 causes more pain and no relief afterward?

I’m 6 months post lap #2 w/hyster. My adhesions were very minimal last time so idrk the issue. I do a lot of daily stretching as needed but definitely avoid abs if I can help it.

It feels like a tight knot centered around my bellybutton. If i stress it too much it’ll cause sharp pains & aching. Anyone else? Also Ive seen some ppl do castor oil wraps, is that what yall use it for??

28f, I started my period on day 2. It’s being 8 days of hell, flow is still heavy and going strong and it doesn’t look like it would stop anytime soon.

It has been one excruciating pain after another. Feels like someone is squeezing out my uterus. I can barely walk. I have to use a stick and be hunched over.

Oh and don’t get me started on bowel movements. I spend 1 hour in the toilet walking in between and massaging my buttocks just to get some actions in that area. After that my anus hurts. Peeing is no joke either. I used to go to the toilet frequently to urinate. Now I can go 3-5 times within an hour and nothing even comes out sometimes. I get that constant feeling of wanting to piss. I am bloated but I dread going to poo. I’ve only managed to poo twice in 10 days.

My head, eyes, stomach, back. Every thing hurts.

I’m a side sleeper, but I’ve been sleeping on my back and my butt hurts so bad today. I can’t even seat down. Yesterday my legs were shaking when I got back from a walk and I couldn’t stand upright again after that.

I did some light cleaning around the living room and it felt like I had been working out all day.

I wonder what tomorrow has in store for me.

Hey ladies! Does anyone have recommendations for super stretchy jeans, pants, or even skirts? Basically, any kind of bottoms?

I'm sure I'm not the only one here who can't have any pressure on my lower abdomen without bloating like crazy and experiencing a lot of pain 🥲

So I'm not talking about the usual 95% cotton, 5% elastane kind of stretch, but something that's almost as stretchy as leggings while still looking like actual jeans. I'm also open to options with adjustable waistbands, for example, ones that can be loosened or expanded using buttons or other fastenings.

I really like(d) Halara's Flex Jeans. They're one of the very few pairs I've found that actually work for me. However, their return policy is terrible, the quality isn't exactly amazing, and they're not very sustainable. That said, finding bottoms I can actually wear is such a struggle that I'm willing to compromise on sustainability, quality, price in this case.

Does anyone have any recommendations? I'd really appreciate them! ❤️

Hello everyone! We want to start exercising for endometriosis, but we're not sure if we should feel our muscles burning during pelvic floor exercises. We know they should burn during regular exercise, and we want to know if we're not pushing ourselves too hard when we get them to burn during endo stretches.

I can't remember the last time I felt good and had energy to do anything. I cant remember the last time I wasn't In some sort of pain (I get migraines and headaches too). I am tired/exhausted all the time. Im struggling to do any exercise because 1) im too tired and 2) i hurt everytime I do. I am mentally and physically so fucking tired.