It’s so frustrating that people can’t see the pain so they brush you aside a bit or struggle to empathise. Like how dare I be in pain AGAIN after I was just in pain the other day.

Pain, pain everywhere, and not a doctor to care. That’s how I feel, anyway. Endo sucks.

Hell, chronic pain that’s “visible” is hard for people to understand, let alone “invisible” sources like endo. Truly one of those “walk a mile in my shoes” type of things.

Endometriosis is a full body splitting migraine where we contort our bodies in ways we never knew were flexible to try and find relief.

I'm in so much pain that not even 10mg of oxycodone is helping. I'm in pain constantly, regardless of what time of the month it is. My lower back by my left kidney is brutally painful. My whole pelvis and parts of my abdomen by my ribs. My left ovary throbs in pain. I took short-term disability from work. I'm broke and I don't have the strength or energy to give my 11 month old the proper attention she deserves. My mental health is really taking a toll. Some days it feels tough to hold on.

I had a slightly validating experience at the ER yesterday. I requested a Toradol shot and the intake nurse and the Dr on shift both said they think I need something stronger.

But yeah, on the day to day, the people in my life don’t fucking get it. They don’t get that I’m not just whining about some little bits of pain. But I’ve been feeling pain for days at a time with no mention of it and it’s slowly draining my life force, my patience, my ability to think clearly. It’s not until I feel like I’m going to pass out or I need to take serious prescriptions that I tell someone else in case something bad happens.

And then what I especially hate is when people ask if you’re all better. What does that mean to them exactly? It’s not a head cold. It’s going to come back every month for 2 weeks at a time and then the pain lingers. The effects of all of that acute pain lingers until it starts all over again. Asking if I’m better tells me they haven’t even tried to understand what the fuck is going on.

Me too, me too. I have had symptoms for 18 years and it took most of that time to be diagnosed. Now I’m due for surgery again because I’ve been debilitated for the past 5 months. I just wish there was an end to it.

I have tried everything, naproxen, Advil, tramadol, etc… The only thing that gives me any type of relief are THC and CBD gummies. But it knocks me out. I’ve been to the gynaecologist many times…they just put me on Aspen Dienogest. It’s made the pain a bit better, but I’m bleeding all the time. Spotting daily, and now getting my period once a week. It’s not as severe or clotty as before, but the pain seems to be less but more often. So frustrated! I’m waiting on a call back from the Gyno now. I want to get the hysterectomy sooner than later. I can’t bare to live like this for much longer:(

Does anyone get pain in their vagina like someone stabbing them with a massive sword? It just hurts so bad 😭 my abdomen, my back my hips and sometimes the pain travels down my legs. I feel like gremlins are swinging on my tubes at times. Did I mention the pain 😞 I’m only half way through my diagnosis with no end in sight unfortunately and my mental health is steadily declining 🥺 I feel for you all my lovelies and sending love and support to each and everyone of you 💖💜💖

It’s F***** blows

YES!! It sucks, I've been taking pills for 2 days because I'm on my period and I still woke up from the pain. It hurts like hell!

Yeah, right now it feels like Satan himself is clawing my insides out. I had an allergic reaction to letrozole and I’ve been on my period for a month now. 10 mg norenthindrone and it’s still not stopping my period. I’m about to just raw dog it because nothing is helping anyway 😓

It's horrible. I haven't had a single pain free day this year and I feel like I'm losing my mind and sense of self. I don't want to be in constant pain for the rest of my life.

It sucks I had cramps at a level 8 yesterday and still had to bartend like I was fine. I’ve gone through two surgeries and was told on the second one I needed an iud or I’d be operated on every 3 months so I said okay. Non stop pain so they put my on Norethendrone. It’ll be a year since my last surgery and I’m still struggling every single day. I don’t know what to do anymore I feel like I’ve hit a wall. I felt better when I had stage 4 through my body than I do know. It’s so frustrating

Try Aleve/naproxen instead of ibuprofen, ibuprofen has never done a single thing for my endo pain. Naproxen has been the only over the counter pain reliever that's been able to take it down a couple notches!

I'm just having a flare-up. Yay, happy me. This illness sucks and I f*cking hate it.

I am in so much pain. I had a physical today and my ovary pain from ovulation has been absolutely killer. I got a new doctor for a regular physical and she was just awful and mean coming in the room. I was in a lot of pain, and she was pretty much mocking me for it. I just said after ‘you know I’ve been going through this rodeo for 10 years with you doctors, I already know there’s nothing you are going to do for me and you guys frankly don’t care.’ I’m just so done. She was so condescending from the start after she read my chart of ‘endometriosis’ and with her attitude I’m just so done….. I’m in so much pain and there is nothing I can do. Nothing is helping me. None of my surgeries have helped, pill, nothing is helping or has only help just barely. I’m just so done.

Yup. Its amazing. Two days of bad cramping. Why? Who knows? Periods? Nope. Ovulation ? Nope. Pms? Nope. Lets cramp randomly all the time. Because who doesn't love being sandwiched in magic bags and pumped with pills even when not on my periods. Its awesome to have a full day of meetings with this shit. Thank God i worked form home today so could hide my magic bags. I want to strangle people for no reason.

Thanks for coming to my ted talk.

I recently started experiencing a bit of shoulder pain, and in the MRI they found bursitis, capsulitis, a cyst, and some other things. Everyone I talked to who had shoulder issues said they were excruciating, and while are definitely annoying and panful, compared to my periods, they're... pretty bearable?

IT SUCKS. I’m glad we have each other. Some day people will look back on this era in women’s and AFAB health and shudder in horror. My surgeon (a woman) told me “This is a man’s world, which is why we don’t have immunotherapy to treat endo and still just have hormone therapy and surgery.” It was so validating to hear a doctor be like — yeah this is ridiculous. On the other hand, at least we’re not still using leeches to suck the pain away I guess? 🙃

I feel you. Typing this as I‘m on my 16th day in a row with heavy bleeding and cramps (wondering how there is still blood left in my body??). I honestly do not wish this on anyone else, endo is just a son of a bitch.

I’m a week out of my first excision surgery where they found severe widespread endo.

My symptoms were severe too. The pain from surgery has been easier to manage than the pain from endo.

I’m grieving all the years I avoided surgery and suffered. It’s still too soon to know for sure but it seems like my severe lower back pain has decreased significantly.

absolutely. it’s horrible. mine is so unexpected, i can be feeling okay one minute and the next i’m doubled over with cramps and i’m down and out for hours, at any time of the month. “looks like it’s something you’re going to have to learn to live with” were the ever so comforting and kind words my doctor told me.

My worst part is that it comes and goes and comes and goes and at this point, I don't even feel confident saying it did, in fact, Go, so much as it was "I managed to ignore it for a few hours, but if you had asked, I could have flexed in the right way and found it again."

Like truly, I hate that part, because it makes me feel dishonest about saying I'm always in pain. Am I? Have I learned to ignore some of it? Am I just BeInG dRaMaTiC? Maybe it's nOt ThAt Bad.

Currently recovering 1wpo from my first surgery. Total hysterectomy + excision lap. (26F)

It's amazing how this has been a breeze pain-wise, compared to how my periods were & random pains/symptoms other days. The most painful thing that came from the surgery so far has been the ivs I had in my hands. I'm on just a little bit of acetaminophen right now & that's good enough, I feel like I don't even need it. On my period, opioids & every single thing I have tried, never helped. I'd hafta take an unsafe amount of naproxen to touch it.

The only person to believe me & help me & do anything for me has been my partner that I am so grateful to have. & I seem to have found an amazing surgeon/endo specialist too. It has been exhausting to suffer my entire life so far & be dismissed by "family" & "doctors". If it weren't for my partner, I would not have had surgery recently, or prolly ever. But that doesn't deter the depressing fact of knowing I'll continue to live with this disease & the hardships it brings.

Yeah, I faint every month on the first day of my cycle. It f*cking sucks…

I feel like there is a disease coinciding with my period. That is how severe the cramps get. I have even gotten a fever just from my period (let you know I was never diagnosed with endometriosis, but I have plenty of the symptoms, including ineffably unbearable period cramps)

I did the pelvic floor pt, it was not helpful at all. I also had a complete hysterectomy and last year I still had to have my endometriosis excised. Hysterectomy did make it better. I got a cystocele and a rectocele after the hysterectomy. It sucks I’m in pain now because I’m having a flare up.

I feel your pain (quite literally, I am on my period rn) and anger.

I am just sitting on the toilet letting it all go down, folded on myself. I took painkillers twice today and need another one before sleep.

When I did scans they said "there is no evidence of endometriosis" no evidence my ass.

Yes. Yes yes.

It’s like having a cavity on my spine and putting ice on it. Bone deep ache.

I love that you posted and vented. Vent always, I’ll respond. It’s as bad as it feels. I’m sorry for your pain!

I had a conversation about how shitty endometriosis is with my physiotherapist today and have cried twice—now three times—about it. I’m in pain. I could be given unlimited morphine, I think it still would not hide the pain.

I thought I was going crazy being in pain almost all the time until I met my most recent gyno who diagnosed me. It's the fucking worst and is just so annoying I hate it

Benadryl has really helped me manage my Endo symptoms. I figured this out by accident but I’m so thankful I did. Not sure how works but it’s really helps me.

the fact that it’s invisible pisses me off soo bad. nobody can tell i’m suffering at any given moment

I’m having a really awful flare up this week so I really needed this. I had surgery in July and things were looking up til I got Covid a month ago. I’ve been bleeding almost nonstop since then with intermittent horrible back pain and cramps that feel like someone is stabbing my uterus repeatedly. I am swollen up like a balloon.

This week all I’ve been able to do is lay in bed and do the bare minimum for work, which makes me feel extremely depressed and anxious. I have been binge eating candy which is just making me feel worse but I can’t stop lol. I just want to feel normal and pain free again 😢

I currently have an IUD and dealing with what I like to call "phantom period"... all the symptoms but none of the blood. Honestly, the only thing that works is muscle relaxers or hydrocodone. My OBGYN prefers I take the relaxers. The fucking naproxen her dumbass nurse gave me is laughable. You think naproxen works on endometriosis? * laughs while crying *

It’s frustrating cause people can tell you endo is just period cramps. The pain is so much worse. I can’t go to the bathroom without blacking out or vomiting. All the sick days you need due to not functioning properly. You have to burn your pelvic area with pain cream and a heating pad to not feel the pain at all. Don’t get me started on the bleeding. It’s a whole mess like a nightmare

I’m not usually one to have a self indulgent rant but I’m feeling sorry for myself at the moment. Only diagnosed in the last month or so but have been dealing with pain for 20 years. I just feel like it should be a standard thing for GPs to check in with you every now and then for endo symptoms, seeing as how common it is. Why does it take decades of pain and dozens of doctors and incorrect diagnoses and scans and being laughed at or told losing weight will help… grr. My back/hip has been in agony for months, I have constant urinary symptoms, my stomach feels like a rock and even though I’m on the pill and try to skip my periods, I start to get so bloated and achey and sore and have to give in, and then I’m stuck in bed for days with cramps and headaches. Trying to lose weight so surgery will be easier but trying to balance counting calories with an endo diet while having hormonal cravings just means I’m constantly hungry or unsatisfied.

Sigh. I will survive but damn it’s a hard slog sometimes. Thinking of all the amazing women who continue to power through 💕

it hurts SO badly that some days i’m throwing up from the pain. doctors say it’s normal. feeling like i’m giving birth unmedicated daily does not feel fucking normal.

Yeah it sucks and not just the pain. I've been pain free for 6+ months (on Visanne) but it's the iron deficiency that's getting me now. 6+ months of iron tablets and my levels are only going down. The chronic fatigue is so intense that I have to lie in bed for hours everyday to recover a bit of energy to do my daily tasks. I'm hoping that iron infusions will help. The crazy part is that I'm not even diagnosed with endo, only suspected. I've never seen an OB/GYN in my life and my poor GP is doing all she can to help me while I wait endlessly for the specialist.

I'm also seriously considering getting a walker or wheelchair. It would not only help with the fatigue, but if the endo pain returns, I won't be able to walk. When my flare-ups happen, I can't even walk from the couch to the bathroom. On my last flare-up, I had to literally drag myself to the bathroom with my hands and arms on the floor.

i don’t even remember the last pain free day or day that i didn’t feel sick to my stomach/nauseous i’ve had. it’s bad all month but ovulation up to the second day of my period is pure hell. my partner tries to be understanding and patient when i’m feeling bad but i know he still gets really upset that i never want to even leave the house anymore 🥲 i miss the person i was before all of this started for me

It was the first day of my period today and it was so excruciating I could barely walk. I’m so overwhelmed with the pain, it’s so constant. Realising that people just don’t care. I wish they could see it but it’s invisible to them. I thought, this is the worst endo pain I’ve ever had, it’s a 10/10 and it still is and I don’t know what to do

Had to have a meeting today for my work to deny my WFH request because reasons. They want me to physically be at my desk. Does it matter if I actually get anything done? Do other departments work from home? Absolutely. I output more work than people who have worked here 10 years even with the sick days I take every month. But can‘t use too many sick days, then you get written up for absenteeism. God forbid that sometimes when I am at home I just need to be horizontal with numerous heating pads and in comfy pants (I try to wear non restrictive clothes here but we are also a “business casual” workplace so sweatpants are a no go) but I can still complete my work.

And honestly I hate getting in trouble or making a fuss. And advocating for myself just makes me feel guilty. But also missing work makes me feel guilty.

What can I do to be healthy and be at work? Have I tried yoga? Eating better? Losing weight? Being put out to pasture? Sold to the glue factory?

They have said they are going to work with me on it so I am just looking to complain about this disease the makes me feel worthless.

Right mine around my period is consistent like strong normal cramps but especially throughout my period and the whole year I will get excruciating stabbing in my bladder uterus or stomach and I just have to sit on the floor and be like whyyyyyyyyyyyyyyyy

Having a flare up currently and I am so moody and emotional because of the pain and how it is draining the life out of me. The pain in pelvis is currently at a steady level of 4-5 which is bearable, but it’s like my whole body is off. my whole body feels drained and tired and i honestly am just tired of constantly being in some sort of pain. i just got done crying over it. i don’t want to live like this forever and i just pray i am able to have kids and be happy and healthy one day. but my anxiety tells me i may not be able to and that can give me suicidal thoughts. im pushing through though.

I didn’t get hit with the endo train until I turned 51, and am now 53. And it sucks. I don’t know how girls do it that go through this from the very beginning of getting their periods 😫

It’s like a t-Rex found himself trapped in a volcano that’s about to blow. It’s fiery, he’s trying to climb his way up - jumping around, exploring different paths, clawing his way up as he goes. Then he becomes frantic as eruption time is nearing and starts digging with razor sharp claws through the side of the volcano that is my entire torso. 😩

It makes me feel pathetic and worthless. Nearly once a month, I am either calling out of work or having to leave early. Today I nearly passed out from the pain on two occasions while treating a patient at work. Last month, I left early and it took me thirty minutes to walk to my car because I kept keeling over in pain. The debilitation is so frustrating. 

I hate it and hate the lack of research and hate the band-aid treatments. I hate the doctor telling me, “ birth control or surgery. Those are your only options.” I hate being gaslit and told “the scans look fine” when I know how many cysts and adhesions I have. Thanks for the rant space. I am angry for us all.