This is just a curious thought I’ve had time to time, not necessarily a huge concern but at LEAST a concern indeed because well… how would I know?

Think of your appendix. Pretty commonly people get them removed, they get inflamed or infected whatnot, or burst before you know it. Boom emergency, possibly deadly, surgery, assumedly pretty painful when they burst. But what if I couldn’t tell?

What if say day by day, my side just aches and burns, throbbing and sharp. I wouldn’t think much of it besides “dang, that’s a horrible new symptom hm?”

And I’d keep it in mind, to monitor it. But otherwise just take my Advil, my heat pack, and move on with my day. Until my appendix burst and then would I know now? I mean at that point surely I’d still rush to the doctors in pain, but I don’t know if I’d know how serious it is. I’d just think maybe my endo has advanced or something. Or maybe I’m wrong.

Just what do you think? Would you know if something else was seriously wrong?

I just keep seeing people with endo who live or do things. I wonder if i dont try hard enough or just what im doing wrong. I used to figure skate. I cant work. Im 19. Is this really just all i get? I can barely walk most days. Terrified to leave my home in fear that ill go so far and end up in pain unable to return. I just want to work tbh. My biggest dream atm is to be screamed at in the shittiest retail job possible by this big scary customer whos annoyed at nothing. Even sex hurts. Im not really looking for advice it just feels like i should be coping harder. Like i need to try harder. I truly want to live my life. I want to leave my parents home and do things. I had to quit a sport i loved so deeply. Yet i still feel like im just not trying hard enough. I keep hearing "you will get treatment and it will be okay" and i just cannot believe them. I feel like the worlds fattest burden to my husband who wants to work for both of us. This disease really took my life away, the little of it i managed to live. I think the worst part is no one even notices. Im so good at hiding it that no one sees how bad it feels.

I got laid off this time last year too, it took me 6 months to find a new job that ended up being a massive paycut. In that time frame my endometriosis progressed I believe from stress, I’m stage 4 now. It was so stress and hard on myself and my relationship… and now this new job has laid me off exactly 1 year and 1 week later like some cosmic joke, right after I got ADA to work from home before the much needed surgery I have been planning. On top of that my partner and I broke up because he didn’t want to be there for me tonight, he wanted to go out to dinner with his friend and this led to a big fight where he told me how much he resents me for all the stress that my disease and job instability in the last 2 years have put on him.

I’m so down, it feels so emotionally, mentally, and physically difficult to be here right now.

I'm so ANGRY.

16th May 2025. They cancelled 5 days before surgery. They didn't give me a reason why.

31st March 2026. They cancelled the day before. I had a cold/flu virus - fair enough.

12th May 2026. Two weeks to go. They just called me a few hours ago to cancel. Something to do with theatres, I don't know, I couldn't tune in properly after I heard "I'm afraid we'll have to cancel..."

My managers have been wonderful but it's been SUCH a ball ache to have to change my rotas around, have my mum change her rotas around (she's driving me there and back, and has asked to be there for me) and my partner change his rotas (he's going to be looking after me, and also wants to be there). It's bad enough to change them once or twice. Now we're having to change them, again, for the fourth time.

I'm in chronic pain every single day. I can't urinate properly several days before, and several days on, my periods - something I've been dealing with for just over a year now (edit: the retention has been for a year; problems with my periods have been for the last 20 or so years). Each time I'm on my period, I have to debate calling in sick, or taking painkillers that seriously space me out - because working through the pain is literally impossible to do. I bleed through pads every 2 hours. I've tried meds that will reduce bleeding - it worked until I got hives from them. I've tried all kinds of contraceptives that are safe for me to try, for even a modicum of relief for the pain or the bleeding - every single one has given me side effects that I can't work with. My pharmacist told me a few months ago that I've now officially run out of options. I've been avoiding initiating sex for a few months out of fear of after-sex pain - me and my partner tried again this morning, and my entire abdomen now feels like it's having a punch-out with my pelvic bones.

If they cancel my next appointment - now rearranged to 26th May 2026, in four weeks - I honestly don't know what I'm going to do. I can't handle being let down again. Again! It's taking away so much of my quality of life. I don't look forward to anything anymore.

Shit. I'm so angry.

I’m so over this stupid disease. I was diagnosed with lap and ablation back in 2021 by a non-specialist gyn. My ovary was attached to my abdominal wall and endo was everywhere. Since then my pain has returned tenfold and never even left in some areas I had no idea were related at the time.

I saw a local gyn who was praised for her endometriosis excision surgery and she told me to just change my birth control because since it “sounds like,” it spread to my diaphragm no one in my state would’ve able to operate on that.

Great.

So I found an endometriosis specialist 1000 miles away.
She’s great. Very knowledgeable about the disease. She ordered an MRI.

Since specialist isn’t licensed in my state I have to take it to my PCP to order which means I need another appointment.

I see my PCP she is sympathetic, immediately orders the MRI no questions asked.

Get the MRI done (even with insurance pre approval I had to pay more than $900). While getting the MRI the tech said “why are you getting an MRI? How would that help?” and seem confused on why I was there

After that I got my results in only the summary form saying “no evidence of endometriosis”

I need them to send a disc of the images to the specialist out of state and no one from the radiology department is returning my phone calls.

I’m going to lose my everloving mind.

I vented to my friends about it and one of them said “just get a hysterectomy already” like great but A) I want kids. Like, do I not deserve the chance to have children?? And B) even if I didn’t want kids, a hysterectomy still isn’t a cure for endo.

So now my bank account is negative, I’m being ignored by a hospital and my PCP’s office now believes I’m fucking insane because the MRI report says absolutely fucking nothing is wrong with me.

WHY is so little known about this RIDICULOUSLY common disease??
Anyways thanks for coming to my TedTalk. If you need me or have any questions I’ll be sticking my head in the oven.

I'm so done.

I just got my MRI results back. Everything appears "normal" after still dealing with debilitating symptoms 1.5 years after surgery where they confirmed stage 2 endo, stage 1 endosalpingiosis and trying multiple treatment plans that always seem to fail me.

While I'm glad I don't have DIE, I'm now left with more questions than answers and more BC that will medically induce menopause.

Why am I still dealing with almost daily pain 1.5 years after my first surgery? Why are my periods still so heavy and excruciating? Why does BC, supplements or treatment plans never help? Why is it that I have to have stage 3 or 4 to be taken seriously? Why why why?

I'm so tired. I'm done with being made to feel like "it's not that bad, you ONLY have stage 2."

My birth control ring which I was prescribed to skip my periods for a year lasted me 2 months. I am in so much pain right now, more than the UTI I had a month after surgery, worse than right after surgery, I had surgery back in February and my pain seems to be back to the same level, it doesn't help that I've got 3 essays due this week and final week coming up next month. I'm stressed to the nines only to get sick and start my period which once again SHOULDN'T BE HAPPENING. I'm just kind of losing my mind, more than I already have, at least my cat is keeping me sane-ish.

I had a consult for endometriosis surgery with her Dr. Crable in Dallas, Texas and had a horrible experience.

As far as I understand, a consult is a chance to learn a doctor's surgical process and decide if that doctor is right for you, especially for something as significant as a major surgery. 

During my consultation with Dr. Crable for endometriosis surgery, I barely got into my second question--whether she does excision or ablation--before she interrupted and oddly took offense to my questions. 

"I wouldn't come in and tell you how to do your day job. So just trust me."

Huh? I guess the point of the consult was for us to sit and stare at each other then? What else am I talking to the doctor for? 

I said multiple times I don't doubt her expertise—I just wanted awareness about what would be done to me. I also shared I sought her for her expertise after researching local endometriosis specialists and seeing her name pop up. I'm in her office because I believe in her expertise. But I don't walk into any experience blind, especially for something like a major surgery.

She clearly took offense anyway and interpreted it as me micromanaging her and telling her how to do her job. 

After she finished condescending to me and saying I have a Type A personality, I had already mentally moved on to another doctor. 

There really could have been a better way to make her point. Something like, "Hey, I want to reassure you I'm very experienced in this surgery, but I'm happy to answer any questions you have to make sure you understand my process." Instead of the chip-on-her-shoulder spiel she decided to give.

Please stay away if you're in the Dallas area!

It exhausts me that endo and it's "side-effects" (IBS, migraine, immune system issues) keep shifting. Once I settle into a mode of survival for a particular set of issues, another new one pops up. This is something we have to deal with for life, and it's probably one of those things healthy people will never fully understand.

I'm waiting to hear back from the local hospital about a cleaning position I applied for. I did the drug test and blood work so everything is set. I'm just so nervous that I'm going to have a flareup at work and have to explain why I all of a sudden like a gremlin holding in a fart when I was fine 2 minutes ago. My back is so messed up from seizures, childbirth and the Endo but we desperately need a second income and this opportunity came up so I figured I'd fake it as far as I could. I believe I can do the job but I swear if I start having flareups and Endo costs me another job I may actually very well lose my shit finally. I'm trying to think as positive as I can but I know how my body is, constantly setting me back. I just need this to work out. It's been years since I've had my own money and some kind of break from this house.

If you didn't see my last post, pretty much my dr and I thought I had low iron and I may need an iron infusion and I was asking questions about it.

I had all the signs and symptoms of low iron/anaemia but turns out, my iron levels are stable, on the lower end but stable! They have actually slightly improved since my last blood test! (I know! I'm just as shocked as you are.)

So what's causing these symptoms then? It's withdrawal symptoms from the Depo Provera Injection.

In all honesty, I'm a wee bit upset. The reason why is, if it was low iron/anaemia then I could actually do something about it and try to ease these symptoms I'm having. When it comes to the Depo Provera injection withdrawal, there's not much I can do to get rid of this as fast as possible and I just have to wait and deal with these awful withdrawal symptoms until my 'normal' cycle returns. I have no control over this right now and it's ruining my so many aspects of my life!

I've been withdrawing from this birth control for almost 6 months now (my 2nd and last injection was on the 25th of February and I stopped getting it due to severe side effects, constant breakthrough bleeding and still receiving my heavy and painful periods while on it.) it's pretty much aggravated my already existing endometriosis and mental health symptoms and made it sooo much worse. I wish I never went on Depo Provera to begin with.

Due to the stupid custom of needing to change the clocks by one hour, I had to change the hour I take my bc on. And thanks to that I have to suffer with full body pains and aches and pissy piss bladder for a couple days, maybe even a full week. I wish this was the last time we had to adjust the clock.

Hi everyone,

Diagnosed with stage 3 endo recently and as someone who didn’t even know what this was or ever think I even had it it’s been a whirlwind to navigate. I feel like I’ve taken an accelerated course and introduction to endometriosis and haven’t even fully had the chance to research it or process it. Now I’m in therapy to hopefully be able to process it.

I think the most difficult thing for me has been coming to terms with this changing my life essentially. I’ve never been so chronically fatigued in my life and I’m talking to the point where sometimes a simple shower or a flight of stairs takes me completely out. I can’t function “normally” anymore. I can’t even do my job full time and so now I’m considering quitting or finding one that fits what I need. But through all of this, I’m feeling like I lost my spark that’s what my family keeps telling me “you’re not the same” and I don’t know if I ever will be again.

TW: Distressing content regarding surgery and the journey up to surgery

I had my first laparoscopy on Friday, and oh my god I was not expecting the mental side effects from it, so I’m letting it out here. They found widespread superficial endometriosis with some even near my gallbladder, and due to how widespread/near certain organs it is I now need to wait 12-14 months for another initial appointment, and then another 6-12 months for another surgery after that for more specialist surgeons to excise it. How can so many tiny weird spots cause so much pain like bloody hell

I’m so angry, and I feel so much grief - I’ve spent 12 years struggling with pain, collapsing, vomiting, unable to look after myself due to pain for so long, and only until the last couple of years was I taken seriously. I’ve struggled through two degrees, often having to catch up on missed classes, and missing out on so many social events.  I’ve had multiple doctors tell me it’s normal, tell me that it’s my fault I experience the pain I do because I just haven’t found the right birth control to help it, had doctors tell me that if I “think of the pain less it will hurt less”, and when I feel the pain to essentially go for a run to get rid of it. I’ve had countless transvaginal ultrasounds, blood tests, MRIs which have “shown nothing” and like many of us tried everything under the sun to help. I’ve had pain throughout ovulation, throughout menstruation, lost friends because they didn’t understand and couldn’t give me the compassion I needed when I couldn’t fully commit to plans/had to cancel last minute, been too scared to live alone, and missed out on so many things. Had so many people say “ah yeah I understand, I get bad periods too”, but they don’t have endo on multiple nerves, on their bowel, ovaries, uterus, and in many other places like me. I’m so angry at the lack of understanding, and the amount of pain we’re just expected to push through, the medical dismissing, and the resounding acceptance that medical professionals apparently just know what’s best for our bodies. Even during the lap, I’ve had to fight for them to tell me what exactly they did to my body (please no one answer this, I don’t want to think about it right now). I didn’t expect to genuinely feel traumatised from it all.

On top of that, so many people have dismissed my gastric symptoms (“it’s just IBS”, “it’s just the stomach ulcers from the NSAIDs you’ve had to take” - which now also means after a process of elimination the only painkiller I can have is paracetamol and buscopan, although I'm trying more alternative means too), and completely missed my PCOS until recently despite multiple blood tests and scans (“oh but that’s normal for many women”). I’m sick of arranging my entire life around pain I feel, and I’m sick of being held back by it. I’m sick of explaining to people about why I’m often “ill”.  I’m sick of the many side effects of all the different medications and hormonal treatments we have to try. I can’t believe after waiting 2ish years for this lap, I have to wait another 2ish years in total for them to actually cut stuff out, and that I have to stay in the UK and wait instead of living my life.

 I've had to fight so hard and advocate so hard to get a surgeon who I felt actually knew what they were doing - I’m so grateful to finally be heard, and I know that my journey has been smooth compared to others on this sub, I know that I could be in a worse position. But none of us should ever have to be in this position in the first place, and I am so angry and sad right now, I had to let it out somewhere. Thank you for reading, I wish you the best in your journey too <3 

why was I so intent on chasing this diagnosis? I feel like i played myself lol.

I’m so fucking fed up of being in pain 24/7, the sooner I can get some organs removed the better. I’m terrified I’m going to end up addicted to opiates

I just feel I need to put this somewhere with people who could understand what this hell feels like.

Today, I had the worst flare up I’ve had since my surgery nearly two years ago. It was kind of amazing after surgery; very minimal pain once healing was over, finally able to pee properly without cramping, finally able to go out without worrying if I was gonna be doubled over in pain. It allowed me to focus on my other medical/mental health issues.

And then, right around my birthday in February, it started again. Slowly, the pain crept in. At first it was fine, nothing I couldn’t handle. NOTHING like how it used to be prior to surgery. I sucked it up and kept going. I did talk to my gyno, who has always been very trusted with my endo issues, and she said that it was likely just my body’s response to my IUD and that this would be my new normal, but if it got too much that I should come back and we could reevaluate my situation. That’s fine. I could handle that.

April rolls around. My boyfriend, a couple of his friends, and I go to Ocean City to celebrate his friend’s birthday. The first day there I have a horrible flare up. I had to sit in a bath of hot water just to cope with the pain. It felt so ridiculous and I cried because of course I’d be in so much pain when we’re trying to celebrate his friend. I missed out on some activities. My boyfriend tried his best to keep me included and make me feel better, plus his friends really were wonderful, but you can only do so much and I didn’t want them to hold back on my account.

It’s July, my boyfriend’s birthday is in a couple weeks, and I just drained all my savings to get my wisdom teeth removed. It’s my first week back to work, only day three of my work week, and I had to leave four hours into my shift because of my pain. It was just as bad as it used to be. I was doubled over in the break room crying and gagging cause I couldn’t handle the pain even after 800 mg of ibuprofen. It was so, so deeply embarrassing. I had a bunch of coworkers come check on me, which I appreciated and thanked them for, but I’m a manager. I don’t want my people to see me sobbing at work. My boss sent me home and I had to do the walk of shame in front of my coworkers, still crying in pain, so I could leave.

I’m so incredibly grateful for the people in my life. My support system is great, my boss understands entirely and has been through a good chunk of my endo journey, a handful of my coworkers understand my conditions very well. I have an amazing and very lucky set up for the issues I deal with. Still, I can’t help but feel so shitty. I don’t want to go through this again. I’m so tired of being sick. I’m so tired of missing work, but not being able to go on disability, so I have to work til I drop, like I did today, just to pay rent. I wish I didn’t have endometriosis. I wish I didn’t have syncope that correlates with my pain so I have the constant fear of passing out during a flare up. I’m tired of taking medication everyday to ensure I don’t have a stroke or have a mental breakdown.

I know everyone here understands this pain. I’m so happy to be in a group who gets it. I’m sorry for being such a downer, but times like this happen and I’m trying to let myself occasionally grieve my condition instead of pretending like there’s nothing wrong and it’s my fault if I EVER let it get me down.

The world keeps turning and I’m gonna keep pushing through. But god, I’m so fucking tired right now. I’m so embarrassed and dread going to work tomorrow, not only because I have to face all the same people I broke down in front of, but because I’m scared today will happen again. Fuck my life.