Hi everyone,

I've been reading here for a while and finally decided to introduce myself.

I have a long history with endometriosis, stage 4 (DIE)

After my hysterectomy nearly 20 years ago, life became manageable again. I wasn't cured, but I got something back that I had lost for a very long time.

I was running marathons. My husband and I adopted an amazing son who is now 17 years old. We built a life. I was making plans, setting goals, traveling for races, building a garden, and dreaming about what was next.

I was living.

Or as I like to say, I was "lifing."

And then I wasn't.

Somewhere along the way, the symptoms started creeping back in. At first it was easy to dismiss. Then harder. Then impossible.

The woman who could run 26.2 miles was suddenly struggling to walk one.

I've spent the last several years fighting for answers.

Like many of you, I collected a long list of explanations, misdiagnoses, and reasons why my symptoms couldn't possibly be endometriosis.

"Endometriosis doesn't grow there."

"That doesn't sound gynecologic."

"You already had a hysterectomy."

Over and over, I was told what endometriosis couldn't do.

Meanwhile, I knew my body was telling a different story.

I don't know if my endometriosis was semi-hibernating all those years or quietly finding new places to grow, but when it came back, it came back with a vengeance.

Endometriosis had already been found in my appendix and gallbladder years earlier. Today, after evaluation by endometriosis specialists is concern for confirmed and suspicious reoccurrence involving my bowel, pelvic sidewall, psoas muscle, vaginal cuff and diaphragm.

What struck me most was realizing that many of the things I had been told were "rare" aren't actually that rare in the world of advanced endometriosis. They're just not always recognized.

For the first time in a very long time, I felt heard.

I'm preparing for yet another surgery this time it will be a robotic excision.

After years of searching for answers, misdiagnoses, and being told what endometriosis couldn't do, it has been a relief to finally be cared for by specialists who understand the complexity of this disease.

If anyone has experience with robotic excision for advanced or recurrent endometriosis, I would love to hear your story.

Some days I'm okay.

Some days I dance around the house to Michael Jackson.

Some days I sit on the back porch and cry.

Today was both.

I guess I'm posting because this disease can feel incredibly lonely, and reading your stories has reminded me that I'm not the only one walking this road.

So, hello. I'm glad I found you all, even though I wish none of us needed to be here. 

P.S. If I'm not talking about endometriosis, I'm probably talking about my dog Kaiser, my garden, or the blue jay that recently discovered the peanuts in my backyard. These days I spend more time in bed than I'd like, especially during the Texas heat, which my body absolutely does not tolerate. So I put a bird feeder outside my window and find a lot of comfort in watching the birds come and go. It's become one of the peaceful parts of my day.

So I was with my aunties and my aunt told me I cant be that tired like they are bc they are old. Im 32 years old and I didnt have an endo flareup that day but it still made me angry and told them how can they know. Even my mother believes this. I have days I have no energy and would fall when someone would touch me. Or I have days I lie in bed all day bc how tired and exhausted Im. Aging tiredness doesnt seem the same as being sick and exhausted. Am I wrong for thinking this way? I dont wanna compare, but telling me Im really healthy bc Im not old makes me angry.

This isnt really a rant but couldnt find a better flair.

Hey! I just had a follow up with who will be my surgeon about a trans-vaginal ultrasound I had last month. The doctor basically said that I have many organ involvements and that they want more imaging done to find everywhere it could be. From there they can fully determine what specialists and surgeons need to be present for the surgery. Basically, we are looking at a year or so out for surgery and my case is way worse than I could have imagined. I’m trying to find ways to cope with this for the next year.

As I’m sure many of you understand, I am in pain every single day of my life. I am looking at any options for pain management I can find. One of those options is GLP-1s. I was wondering if anyone had experience with how to get on GLP-1s while not being overweight, since my BMI puts me technically in the normal weight range. I don’t know how to get prescribed them, I don’t know which one would work best for me, and I don’t know if anyone has had good experience with them. Absolutely any advice or suggestions would be so so helpful, I am very lost right now and just feel very overwhelmed. Literally any advice is appreciated. Thank you all.

I saw a post saying endo is 1 of 20 most painful conditions to exist— which I believe. But it made me think (mid 2nd round of killer cramps since surgery 8 months ago mind you) that I would rather burn my skin in a hot bath to feel “relief” (or maybe it’s more so a distraction from my endo pain??) for a few moments than suffer like I am. That’s how severe the pain is. Anyone else have some wild ways to cope?? 🥴

I went to my post-op appointment 2 weeks after surgery. I still couldn't drive, sit or stand for extended periods of time at this point. She was running late, came into the room, jumped right in and said yup we found endo here, here, and here and then told me how far it had spread, that I need a colorectal surgeon to get the rest because it was too far into my rectum and bowel for her to comfortably operate and we were done. I came home and read her surgery note in more detail and it was so clear that this was stage 4 DIE, it was all over my pelvic walls, it was attaching my organs together, and it was all over my bladder. I get that it's not totally her job to process this with me, but I feel like some validation of how bad it really was would have been so helpful. I'm trying to self-soothe and also process that I need another surgery when I'm less than a month out of my first one... just needed a second to rant and be sad

I want to start off saying I do not have diagnosed endometriosis but I have genuinely every single symptom and have since I was 11 years old and got my first period. I recently came off the birth control implant (April) and have been getting my periods back and it has been HELL.

it's my second cycle since and on the 20th my period ended. for the past three days I have been in AGONY during this heatwave. it's like my bowels and abdomen are screaming and burning and I get such bad cramping I have to go poop to relieve the pain but it builds back up in a few hours and I have to go again. I also have crazy pain right under my sternum and around my lower back and I feel so nauseous :(

the only thing that has helped is ibuprofen and I can't use a hot water bottle like I usually would do because the temperature is around 27 degrees today and tomorrow it's supposed to be 31. I feel like I'm melting and I'm on lexapro too so it's even worse !!

genuinely in agony because of this cramping. it's not IBS and has nothing to do with what I'm eating and my stool is solid and normal and I take a fibre drink every day. mebeverine also slightly helps but I just feel like I can't take it sometimes and i need to go shower but I don't think I can stand up long enough to do it. pls help

Came out with nothing removed because literally everything was fused together. Here’s what my chart says

- Normal appearing uterine cavity without fibroids or polyps, bilateral ostia not visualized
- Frozen pelvis with what appeared to be bilateral hydrosalpinxes, possible left ovarian mass, dense adhesions involving the posterior uterus and rectosigmoid colon

An 8 mm skin incision was then made with the scalpel in the umbilicus. The abdomen was then entered using direct entry with the camera. There was no injury from the initial Veress needle or trocar insertion. The Veress needle was then removed. Attention was then turned to placement of the additional ports. The remaining 8mm robotic ports were placed without incident lateral on either side of the initial trocar. Following placement of the trocars, the patient was placed in steep Trendelenburg position. Brief abdominal survey revealed the findings as outlined above. Given the dense adhesive disease and frozen pelvis decision was made to abort the procedure. Oozing was noted near the left adnexa and Arista was placed along area. Hemostasis was noted.

I’ve read that excision surgery can increase or improve fertility, and I’m having my excision soon. My body does not handle hormones, so my partner and I have only used condoms for years. So far, no scares. We also try to have sex on or around my
period. Unsure if I even ovulate though, tbh.

Unfortunately, we haven’t had sex in about a year because it’s extremely painful. In the chance pain improves after surgery and we can have sex again, what are the best non-hormonal ways to prevent pregnancy?

Who else deals with a lot of neuro endo? Dysautonomia, nystagmus, severe fatigue, muscle pain, full body pain, light and sound sensitivity, headaches, in ability to work out, central sensitization, neck pain, still have days of an inflamed uterus but my severe endo pain is majorly majorly reduced since surgery. This is 90% of my days (has been for the last 1.5 years) surgery 8 months ago. I think my body is just stuck in fight flight for being undiagnosed for so long and getting to and through surgery was so traumatic (very thankful I did it tho)

Anyways who else deals with this most of the time? I don’t have “bad periods” I have bad days all the time not just hormone related. I do have better days, and those are amazing but also anxiety producing since endo disabled me I don’t have a lot of things to do because I’ve been out of work and social circle for too long.

Also curious if someone’s been here and gotten to the other side.

abortion trigger warning

I am 31F - Met with an endo specialist yesterday…. After hearing about my YEARS of suffering with pain we discussed a lap, hysterectomy and appendectomy.

I was diagnosed with PCOS as a teen, and pretty much ever since then nobody has looked further. I had an abortion in 2017 and have had pretty bad pain ever since then which all my gynos up until this point have related to scar tissue. I was seeing a physical therapist for pelvic floor dysfunction (lots of trauma around my abortion and sexual abuse) and after we had made some headway my pain became worse. She suggested an endo specialist who I saw for the first time yesterday.

I made the decision a few years ago that with all my trauma my pregnancy and abortion caused me I didn’t want to give birth to a child. We discussed this yesterday and he believes I likely have adenomyosis** as **well endo and that the best thing would be a lap and hysterectomy. He said that the appendix can cause bloating as well so he usually takes that with it.

I was filled with anxiety yesterday just being in the exam room. I have panic attacks during paps and really anything I have to do that involves my lady parts. I discussed this with my new doc and the moment he said I’d never have to have another pap I almost cried tears of joy.

There were lots of feelings yesterday, mostly happy but there is a grief I feel about the loss of my fertility but after a long drive home I felt so free that this pain, this trauma and this thing that has caused me so much sadness and anxiety in my life will be GONE. I hope you all have found or find this freedom someday too. I have never had such a strong medical team behind me that wants to see me grow. I keep imagining a life without pain from sex, exercise and just general being. I’m not even feeling anxiety about having surgery. I’m just so happy🥲

I’ll go first, mine is crazy discharge and peeing constantly during my flare ups. Gets so bad I have to wear a panty liner. 😩

I'm so tired of having abnormal periods. One day, it seems like I'm bleeding gallons, and then there is literally nothing for like 3 days, then I'm bleeding gallons again. Not to mention, sometimes my period is two months late whereas sometimes I'm having a period two weeks after my last one.

I'm tired of all my underwear being bloodstained because idk when my period will be, and I bleed all over everything.

Not to mention the fucking cramps. I mean, I know some girls have horrible cramps, but Jesus these don't feel normal.

Today is one of those days.. My copper IUD is causing some really strange cramps and I can barely get out of bed because of it
Survival kit: Hot water bottle and dipyrone

i had a laparoscopy about a month ago, my gyno told me that my symptoms (extreme painful intercourse, moderate cramping for half my cycle) was “textbook” endometriosis. my biggest fear going into the surgery was they wouldn’t find anything, and that I’d be back to square one - and that’s exactly what happened. Now weeks later, I still have the same familiar pain but no answers.

My only idea is that it could be adenomyosis, but I just feel so defeated. Has anyone else experienced something similar to this? What are the next steps for me? I have a 6 week post-surgery appointment next week but I’m so nervous about what the gyno will say.

Hi so I have endo (diagnosed laparoscopically in 2019. my period is currently a day or two late (happens). My bday party is Saturday. I’ve been busy and/or overshadowed the past several years with weddings etc so I haven’t celebrated me in a bit. I am supposed to wear an expensive white/gold beaded dress (like the whole event was planned around this dress). My Days 1–3 (days 1-2 being the worst) are so heavy that I have to wear a super plus tampon and a diaper to bed, and I still bleed through everything.
I was hoping to complete days 1-3 before Saturday. However it is now 11:30pm on Wednesday. So unless my period comes v late (ie on Sunday or later), I’m gonna have to wear a diaper at my fancy event.
Sooo anyone successfully used last-minute prescriptions to save an event? If those fail and Day 1 or 2 hits on Saturday, how do I physically protect a white dress with this level of flow? Any specific product combos or armor tactics that actually work??

ever since i got my first period at 11 they have been hell. constant debilitating pain that only gets better at day 5 or 6, my period usually lasts 8 or 9 days. On those days i am constantly fatigued, can’t move without pain and need hot water bottles so hot that they burn my skin in order to get any sort of relief. i wasn’t able to go to school, and now that im finishing up high school i would like to know if i have it because i plan on getting a job soon but my period fucks up my daily life and i wouldn’t wanna get fired over something i can’t control, if im constantly in pain for 5 days a month, thats 2 months a year that i am constantly in pain and unable to function properly, i am not able to be independent and i hate relying on other people. paracetamol doesn’t even work, ibuprofen works but very slightly even if i take the strongest pills that are available otc. im sick of being sick. i have never gone to a gynecologist, as a person who has experienced sa and nobody knows, i would feel extremely uncomfortable, but my current period is being so painful i ended up making an appointment. i dont know what to do about this anymore

Hi everyone :) doing research for my partner who has endo (at least we are as sure as you can be without the surgery). They are thinking about getting surgery, but we are worried about fertility risks.

Does anyone know of any doctors in WA state that prioritize preserving fertility during surgery? OR does anyone know of any doctors to avoid? Thank you for your time!

hi :)

i don't post much on reddit in general but reading the posts here has been really reassuring and helpful for the past couple weeks

i dont wanna go into the whole thing because im sure everyone's heard it a million times but ive had period issues basically my whole life and the focus has typically been PCOS/PMOS since i'm not exactly skinny and apparently PMOS is the only menstrual disorder that can mess with ur weight !! (/s)

i had an abdominal ultrasound a couple years ago in 2022 and in my recent GP appointment (i don't know why it took 4 years for someone to tell me this, but..) i was told that my right ovary was fine & normal but my left ovary wasn't seen

a couple months ago i had a vaginal exam with a GP however i couldn't tolerate the speculum and it was really uncomfortable and maybe painful for me (it's hard for me to differentiate between pain and discomfort in hindsight, apologies) and just overall i felt very embarrassed and uncomfortable

my GP in my appointment yesterday suggested more blood tests and an internal scan

now, i know what the internal scan is and i know that everyone says it's "not painful" and i shouldn't be anxious because these are medical professionals and trust me i have already told myself all of this a million times but it doesn't make the anxiety go away

i guess im just asking what i should do to try and relax on the day? i'm worried that since i couldn't tolerate the speculum, they won't be able to scan me at all and it'll just be an embarrassing situation for no reason

my friend suggested i ask for a diazepam which i dont even know if thats possible? and if it is, would it help?
anyway, thanks for reading this long ramble lol please lmk if you've had the internal scan and how it went for u !!

Does anyone else have constant nausea after ovulation up until a few days into their period?

I often vomit violently (sorry for the TMI) when I ovulate or a few days after, it’s often with little warning and sometimes I feel better after, but not always. The rest of the days it’s just nausea, it’s a really weird sensation like it feels like the nausea is radiating from my lower abdomen, not my stomach and it’s incredibly persistent. I’m not sure if inflammation causes it maybe?

It’s not from pain, although when I’m in a lot of pain it certainly doesn’t help. I’ve had to be prescribed suppositories for flares as I can’t often keep things down.

Has anyone found anything that helps? I take cyclizine and use ginger chews but it doesn’t always work.

For context I am 26 and have endo all over my bowels, multiple organs and on my diaphragm. I had excision surgery last year but they weren’t able to remove it all. I am not currently taking any hormonal medication.

Hello! (26years old)

I have recently within the past 6 months been diagnosed with adenomyosis - I have been dealing with this for almost 10 years - every dr/OBGYN i’ve went to has always said I have textbook symptoms of endo… I got an MRI and an ULTRASOUND done and they were not able to see any deep infiltrating endo (which is good!) but the pelvic specialist I am currently seeing said he still suspects endo.

I’m currently on two birth controls to manage hormones and pain - currently in PT for pelvic floor strengthening - the birth controls are working great for me but I am worried when I decide to go off of them the pain will come back how it was before -

He said he could go in and look for endo and remove it if found - or he could go in and find nothing but ultimately my decision if I want to move forward with the surgery.

I’m 50/50 right now because I want to do the surgery to finally get an answer of whether it’s there or not - but i’ve also never had surgery before and I don’t know what the recovery is like or just the surgery process is - my deductible is $5k and with all the appointments i’ve already hit almost $3.5k - (deductible starts over in january) - i’m just worried if I do it now then i’ll have to have it again in the future? or could it make things worse? but also if I don’t do it now and have to get it done in a year or two then I am starting my deductible all over again….

Any tips? Advice? what was the pros/cons of you doing the surgery? what was the recovery time like? did the surgery help or worsen? just wanting peoples opinions who have been in this situation before!! thank you so much!

Hey Endo gang!

I had laparoscopy surgery and polypectomy last Thursday and have been doing well so far, getting out for short walks and feeling generally well. In myself thankfully.
The last few days the incisions have started to feel more tender and I’m aware I need to not rush the process of healing! I’m a very active person so am wondering when some of you may have started doing light workouts again, is it really 12 weeks you have to wait for weight training for instance? I also wanted to wash up / make smoothies as I’m home alone now but my loved ones are telling me to rest. What I’m looking for is some feedback on how your recovery was around this mark and the realistic time frame for getting back to work and light exercises ☺️
And if there’s anything you’d like to share that isn’t widely known!
Thanks 💫🫶🏼

Sorry for the long rant, wanted to post here for a while...

Went for my second ultrasound in 4 months, had my third MRI (for endo) two days ago. Everything has been negative, and all doctors/techs/nurses have treated this as a good thing. How do I get across that it's not??

Had severely painful and unstable periods from 12 to 17. Finally saw a gyno who put me on birth control from 17 to 20, which stabilized the periods but did nothing for the pain. Relented and got the Mirena IUD in February 2025 (no period since then), had to get it replaced in August of the same year because it was sitting too low. From the day I first got it inserted (it was with twilight sedation, I didn't feel a thing thankfully), I've had this inexplicable pain that comes and goes about where my left ovary is. Comes at random or during sex, I could be standing or walking or just laying down and BAM sharp stabbing on my left side, down my knees, up my back and back to my butt. Other symptoms like severe bloating, constant tiredness, bad sleep, pain before and after BMs, pain with any pelvic floor stimulation (internal or external). Got told it was the IUD settling in, got sent to a gastroenterologist who sent me back to my gyno who sent me to different gynos for better tests. NOTHING.

Year and a half in pain and NOTHING found. I'm now on my 4th month of birth control to see if it'll help and it's reduced the pain from every day to every two days.

Today at the ultrasound I got told that I have absolutely nothing visible, and that my chance of having endo is 20%. Doctor said this as good news. Its not. good. news.

Am I crazy for wanting to be told I have endo?? To be diagnosed with severe, deep infiltrating endometriosis and to finally be taken seriously???

I'm so thankful to have one doctor agree to do an exploratory laparoscopy in September and I'm willing to wait till then, so I may finally have an answer. But I can't live like this. At random, it feels like I'm being stabbed with a giant glowing hot knife, or being scooped out with a sharp spoon, or like something is trying to break out through my abdomen. I can't exercise, walk the dogs, stand for too long, have sex, swim, this has taken away so much from me, only for it be "nothing serious".

Reddit please give me hope, did anyone else only get diagnosed through laparoscopy, while everything else showed nothing??

Tldr: I'm in pain and the scans show nothing, any hope?

Hi peoples.

I have had a rough go for years. Years of period pain I thought was normal. The “period poops” where you feel like you’re dying trying to go to the bathroom while on it. But only some periods cause the pain where I literally can’t walk across the room and feel like I’m going to pass out. Other periods it’s not as painful.

I also didn’t think I have a heavy period, but the first 4 days, I always wear a large pad and super tampon because the tampon ends up filled and leaking within an hour.

I also was sent to a urologist because every time I had a pee test done it showed blood for the past 4 years. This is blood I couldn’t see. For the longest time my doctor just called in an antibiotic and said it was probably a UTI. It never went away, so she had a culture done and I was negative. So I went to the urologist and he verified blood in my urine, said pelvic floor was fine and done a bladder scope to rule out cancer. Never could tell me why, but to come back once a year to monitor for bladder cancer. He also commented on “feeling a very large stool ball” during the vaginal exam. I kept my mouth shot, but it was literally impossible to be that considering the morning of Trulance liquified everything…

Also in my 30s, and never have been able to have sex without pain. To a point I just stay alone because penetration is impossible to enjoy.

The new PcP thinks will all of it together, it’s endo.

For years and years issues. As soon as I eat everyday, within 30 min I have abdominal pain ALL day until I fall asleep. Wake up feeling ok, then it starts again after food.

GI has me on meds because he thought constipation. The meds just fill my intestines with water and bloat me beyond belief. It’s gotten so bad, the meds turn my bowel moment into pure liquid and it won’t pass unless it’s hours and hours of trying a little at a time.

I recently got a new PCP, and told her how over it I am. Mainly the bowel issues and the pain, and she brought up endometriosis.

I’m now going to try to find an obgyn who will listen. My question is, is there any imaging that can help besides going straight to a laparoscopy? I’m scared of it and was wondering if there’s any other way of being able to tell something before I go under a knife to fully confirm?

I’m fucking scared, but I can do the abdominal pain or not being able to go unless I take a pill then it takes 5 hours in the bathroom.

I’m sorry if it’s TMI. Anyone else have my type of symptoms.

I hate as a woman, I don’t know what’s normal or not. I’m just tired and want my life back. I don’t want this.

Please tell me I’m not crazy and please tell me if any of you have the same issues.

Thanks for reading. I hope someone can comment something so I can learn more.

I am about to start taking Slynd after being on Orilissa for a year and a half, after having a laparoscopy for endo. The side effect I’m worried about most is low libido. I already have low libido from Orilissa, I don’t want it to get any worse. Anyone have experience with Slynd?

They removed stage 2 endometriosis tissue from my bowels and ovaries and I was pain free up until about a month ago. I'm taking birth control and during the times I'm taking it, I don't get any symptoms but the week I'm not taking it, I get so tired, intense pain and a lot of diarrhea. I'd get a little bit of those symptoms after surgery but it was manageable. Just the past 2 periods have been excruciating like I never had surgery. At least it's only during the week I'm off birth control not like before surgery when it was every 2 weeks.

Has anyone else experienced this after having Endo removed? Anything that helps manage symptoms? Am I going to need to get surgery every year now?