r/endometriosis

Edit : thank you everyone who replied. You gave me some really good points of view to think about

I would like to offer 2 apologies. The first being I had just been looking at other posts discussing the recover and there were a lot of horror stories on there.

I then made this post whilst I was admittedly having a complete panic attack. Which is probably why it reads like I'm a nutter.

The second being about the analogy of stab wounds. I admit not my best analogy. I meant like..... The implements they use going through all the layers of skin and muscle and then they are 'inside' you. I thought they are quite large so used the analogy of stabbed. It was the only way I could think to explain it in my panic induced ramblings. But I admit I could have explained it better if I had actually waiting before posting this instead of posting whilst not being able to breathe.

---

I mean ...... You basically get stabbed multiple times...... And it goes through all the tissue layers. Not like superficial.

Either they remove stuff like a cyst or an ovary or basically use a cheese grater on your insides to scrap and remove all the endo shite attached to you.

Then you get given a few paracetamol and get told to go home after waking up like 2 hours before.

Like..... Wtf ?!

Why aren't you kept in at least overnight ?!

You've basically just had the same as multiple stab wounds?! Do those people get sent home 2 hours after they wake up ?!

Do they only get a paracetamol?!

I'm pretty sure they have to stay in a few days and get things like morphine drips.

So why don't women after a lap ?!

They potentially remove organs like a cyst and maybe the ovary if it's damaged .... Then of course scrap the Endo out .....

And what .... Wake up and send you home?!

Like ...... Fucking what ?!

Why aren't they kept in at least overnight for observation?! Why arnt they given decent pain killers ?!

Why are they told they can return to work after maybe 3 days ?!

Someone who gets stabbed multiple times in the stomach ain't just going to get told to go back to work after 3 days surely ?!

THEY FOUND IT. I WAS RIDDLED WITH IT. All over my pevlic sidewalls, sigmoid colon, and they had to take out my appendix! My right ovary was attached to my pelvic sidewall and was twisting in and out of torsion!

Get the surgery. It's life-changing. The surgery recovery hurts less than the Endo, and my sciatica like pain was completely gone the minute I woke up! My colour has come back, my acid reflux has stopped, and my face isn't all swollen! I'm not red everywhere anymore!

I LOVE BEING RIGHT, F YOU MEDICAL SYSTEM I WAS RIGHT.

My Mum is already drafting very angrily worded letters to some of my doctors, and the ER nurses who treated me so badly. She's been waiting to do this for 4 years. Way to go, Mum!

Hey yall. I’m 9 weeks pregnant and my 6w scan showed a 13cm endometrioma. We’re coming up with a plan at my 12 week appt to decide if we want to watch and wait since it’s rare for it to cause issues, or laparoscopically remove to be proactive and get it out of the way.

Apparently they commonly shrink in pregnancy which would be fab (mine already shrunk to 12cm in just two weeks).

We’ve discussed that there’s no risk to the pregnancy, but the main risk is just the crazy pain if it ruptures or twists.

So for you that have had the misfortune, I am curious what it actually feels like when it happens?

I have been told I will absolutely know if it happens and that I’d just head to ER and call my on-call OB team to evaluate next steps.

Has anyone experienced this or know someone who has?

30F, was super active and fit prior to this ordeal. the surgery was when I was 28.

Had a laparoscopy for diagnosing endometriosis because I was struggling with infertility and my surgeon most likely severed my illioinguinal nerve and my genitofemoral nerve. Woke up screaming in pain about my right side. Everyone downplayed it to me then, as well as in every medical record and note. So 1.5 years later I still have this severe pain and it further prolonged my fertility journey. I’ve seen multiple specialists, had multiple trigger shots and nothing helped until I saw a plastic surgeon who put me on 900mg gabapentin which helped reduce my symptoms by about 75% I’m grateful for that but it took me a year of advocating and living in hell (I do not say that lightly) to even get there. 

Now I’m doing IVF and will not get to take the gabapentin while pregnant which horrifies me. 

I’m so lost and sad and don’t know what to do. I’ve had mris, ct scan, and they looked normal. Plastic surgeon said surgery probably wouldn’t  help because he’d have to fish around my body for the other half of my nerve(?). He also said getting pregnant might help my pain because of hormones? I just have such a trust issue after all this. 

I’ve felt pushed along and dismissed this whole journey and most of all I just wanted to start my family. Now I’m scared that I’m going to be miserable and in substantial pain my whole pregnancy and beyond.  I need someone to give it to me straight about what is going on and what to do next to help myself. 

Also I have extremely detailed messages between my surgeon and I where I explain how much pain I’m in, how worried I was and he reassured me time after time it was fine. I knew it wasn’t, it still isn’t. People in my life advise me to pursue a malpractice case. I just want to feel better. 

Lower right abdominal pain, groin pain, numbness to my pubic area and down my inner leg, muscle cramping, tightness, clothes hurt, lifting heavy things causes delayed terrible pain. I’m so depressed and need clarity. 

hey all. i (23f) have polycystic kidneys and tonic clonic seizures and a couple other things that just go to show that I’m not winning any genetic lotteries lol.
I’m currently undergoing evaluation for endometriosis and I just had an MRI to map out exactly where my kidneys sit because they are enlarged, and that will complicate the laparoscopy.

What concerns me is this distinct pain that keeps coming back to my chest. I can’t differentiate if it is truly inflammation pain or if it is referred pain bouncing around in there, but I’m hesitant to dismiss it as the latter because it keeps coming back to the exact same spot under one breast and in a parallel spot around my upper back. That’s the spot where it started, but now when things flare, I can feel it elsewhere in my chest and sometimes really sharp directly in between my boobs. When everything else flares, breathing becomes genuinely painful. I’m concerned that it might make things more complicated working around my giant kidneys if they have to enter at the ribs to check for any pleural involvement.

Is this something I should seriously stress to the care team before they go in? Anyone that had lots of intense chest pain turn out to not have the thoracic kind? I know this is a full body inflammatory disease, it’s just throwing me off that it keeps coming back to the exact same spot.

I haven't had cramps like this in a while and unfortunately I work a very public facing job without a private office (and a private bathroom.)

Does anyone have any suggestions on working through such bad cramps in a public place? I'm hoping my pain meds kick in!

Hi I was wondering what I should do as I have suspected endometriosis, since my 3 week bleed came to an end I've been experiencing nerve pain.

The pain was first in the lower left of my back, left ovary going down to my big toe. Now it's just in my left leg as nerve pain but when I stand for over 5 mins, my leg feels like it has a pulse for it goes and nearly makes me fall over.

I have a telephone appointment next Wednesday for this, no doctors available today. They told me to go to a pharmacy for co-codamol but that's not gonna do much. I'm worried as tomorrow I do have my pelvic ultrasound that I've waited weeks for but I'm scared that I'm gonna fall over as soon as I walk down the hospital corridor.

I am alone as I'm away from home for uni, do I cancel and get it rescheduled at my hospital at home so someone can go with me or do I risk it? The waiting times for these is like 6-10 weeks and no painkillers have helped which also goes for mefenamic acid which is playing up with my GERD (chronic acid reflux).

Any advice would be appreciated, thanks 😌

Hello
I’m 22 with severe pain and deep endo (based on MRI). I’m going after 1.5 weeks to discuss the excision surgery date with my endo specialist.
Any advice… what should I tell him.. ask him.. know…
I have no clueee
Thankss

Hello, I’m currently ongoing the very early stages of endometriosis investigation. I’ve been recommended the pill by my GP which I have not yet taken, as I wish to push for diagnosis.
I’ve always had pelvic issues, but in the last 5 months, it’s very quickly worsened. My bladder hurts when full or emptying, and it also links to my bowel pain. I have what I assume to be cyst they were unable to find during my pelvic ultrasound, that now causes immense pain during my periods. My period pain has been travelling down my hips and legs severely. I have a lot more symptoms, but would rather not discuss them here, everything seems to flare up when I eat. Work is hell, I’ve been spending most of my time in tears, clutching my hot water bottle for dear life.
I have most of these symptoms outside my periods as well, is this something normal for endo? To have this pain all the time?
I’ve likely had this for a few years, but can it rapidly grow over a few months? Or have I just reached a stage where it’s becoming chronic?

I have an appointment on Friday to discuss my options, at the same time I’m worried I’m pushing for this diagnosis only for it to be wrong.

Hi 👋🏽, i hope someone can reassure me..

I had a complete hysterectomy for endometriosis/adenomyosis after 3 decades of pain. I had excision surgery and adhesions removed, and they took everything out, including cervix/tubes and ovaries. I’m now 14 weeks po and getting discomfort and dryness where my cervix was and also endo type pain in my pelvis. I was told by my surgeon that it’s impossible to get a return of endo so quickly, especially as he used a special solution to prevent adhesions reforming and even tiny microscopic endo was blown up on the screen whilst he was operating, so it’s highly unlikely any endo would have been missed. Every tiny bit was taken out. But I’m getting that familiar tugging and pulling and sharp pain again. He put me on HRT day after op (oestrogen only) and I’m wondering if that had anything to do with it? I did ask for progesterone but he said it wouldn’t make any difference to me. I’m in so much pain .. I will see him again next week, but I was wondering if anyone else has experienced this? My surgeon is an expert on endo and endo/excision surgery and I’m based in the U.K..

Hi sorry! I was wondering if anyone can help me figure out what the hell is happening to me. I (F18) got my first period at 12 and I have always had insane bloating during ovulation, luteal, and menstrual (so really only some relief during follicular). My cramps are debilitating and I get heavy nausea but never throw up I get really dizzy but I don't really bleed a whole bunch I got on the IUD (hormonal) 2 years ago and the cramps became manageable with no bleeding, however I'm almost constantly having uterine cramps - NOT stomach cramps no matter my cycle stage. The debilitating aspect came back this cycle and I have no idea what the hell is wrong with me. I've gone for countless imagings and ultrasound both abdominal and vaginal and they can't find any cysts, signs of cysts, endo or adeno or anything that can point towards what's causing this pain, there's a family history and I just want to know what it is.

TIA

Edit to add: all labs have come back normal aside from occasional iron deficiency

Hi all, I am suspected to have endometriosis and am on the waiting list for a laparoscopy.

Whilst I have all the symptoms and I do suffer with severe cramps and bleeding (sometimes for 3 weeks at a time). For me, by far the worst and most constant symptom is nausea.

I feel sick more days than I do not. I vomit at least once a week. I take anti nausea tablets almost every day. And it gets in the way of everything.

Years ago my GP told me the nausea was anxiety however after getting therapy and my anxiety improving a lot, I still feel sick most of the time. So I know it’s not that. It was only last year that my GP told me this was a symptom.

Does anyone else have this constant nausea? And how do you manage it?

Hi everyone,

I’m Dr. JM, a surgeon specializing in Complex Benign Gynecology and Minimally Invasive Surgery in Phoenix, AZ. My practice, Lumina Surgical Gynecology, focuses heavily on endometriosis, adenomyosis, fibroids, and complex cases.

I read through this subreddit often and see so many of the same questions and frustrations—especially around getting a proper diagnosis, the confusion between ablation and excision, and whether imaging is actually “worth it.” I wanted to share some insights from the surgical side on why imaging, pre-surgical mapping, and complete excision are so critical for long-term relief.

1. The Myth That “Imaging Can’t Show Endo”
   You’ve probably heard (maybe even from a doctor) that endometriosis can only be diagnosed through surgery. While a laparoscopy with pathology is the gold standard for definitive diagnosis, the idea that imaging is useless is outdated.

Expert-guided imaging—specifically a dedicated pelvic MRI or advanced transvaginal ultrasound done by someone trained to look for endo—can be incredibly valuable. While superficial endo might not always show up, imaging is excellent at detecting:

•	Deep Infiltrating Endometriosis (DIE): Nodules on the bowel, bladder, or uterosacral ligaments.  
•	Endometriomas: “Chocolate cysts” on the ovaries.  
•	Adenomyosis: Often the culprit behind heavy bleeding and a “boggy” uterus, which frequently co-occurs with endo.

If your imaging comes back “clear,” it does not mean you don’t have endo. But if it does show disease, it completely changes the surgical approach.

2. Why Pre-Surgical Mapping is Crucial
   Imagine trying to navigate a complex road trip without a map. That’s what surgery without proper pre-operative imaging can be like.

When we do advanced imaging beforehand, we are “mapping” the disease. If we know ahead of time that there is bowel involvement, we can ensure a colorectal surgeon is on standby. If there is ureter involvement, we might need a urologist.

Mapping prevents the heartbreaking scenario where a patient wakes up from surgery only to be told, “We found endo on your bowel, but we couldn’t remove it because we weren’t prepared.” It allows us to plan for a single, comprehensive surgery rather than multiple incomplete ones.

3. Ablation vs. Complete Excision
   This is one of the most important topics in endo care.

   • Ablation (Burning): This technique burns the surface of the endometriosis lesion. The problem? Endo is like an iceberg. Burning the top leaves the root behind, which means the disease (and the pain) often comes right back.
   • Excision (Cutting out): This involves cutting around and completely removing the diseased tissue from the root, preserving the healthy tissue underneath.

Complete excision is technically much more difficult and requires specialized training, which is why many general OBGYNs default to ablation. However, excision is widely considered the gold standard because it offers the best chance at long-term symptom relief and lower recurrence rates.

Advocating for Yourself
If you are considering surgery, here are a few questions you have every right to ask your surgeon:

1.	Do you perform excision or ablation? (Look for excision).  
2.	Do you order specialized imaging (like an MRI with endo protocol) prior to surgery to map the disease?  
3.	What happens if you find endo on my bowel or bladder? Are you equipped to remove it, or will you leave it behind?

You know your body best. If your pain is being dismissed, or if you are being pushed toward treatments that don’t align with your goals, keep seeking second opinions.

I hope this helps clarify some of the confusing aspects of endo care. I’m happy to answer general questions in the comments (though please remember I can’t give specific medical advice over Reddit!).

Sending strength to everyone navigating this disease. 💛

I (F17) have no idea if this is a normal practice, but I was so in awe! My uterus, ovaries, and insides look like that?! And I get to see them?! I’m five days post-op and I don’t think I’ve smiled that hard since I was under lol!

I’m a very very squeamish person, (even passing out during one of our pre-op visits lol!!), but somehow my intestines just amazed me! I feel so lucky to have been able to seen what my anatomy looks like in real life, not just images in textbooks.

She went through every image and explained everything she found, what was in the image, and used easy language. Still waiting on results from pathology, but the “suspicious tissues” she found and evidence of chronic inflammation are making me feel less like an imposter lol.

Has anyone else felt this way about being able to see their own body?

Hey 👋
I am looking for a great alternative to coffee that I can use and ditch coffee intake for endometriosis symptoms management pls… can you guys share ur experience and what you have discovered and helped you so I can also learn and try for myself ❤️💐🎉👯‍♀️👯‍♀️👯‍♀️🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟

One monday i woke up feeling extremely fatigued. A heaviness in my limbs i had never experienced before. I was a bit worried, more worried about not being able to go to the nursing home where i was being overworked as a nursing student though.

But my body needed rest, cant argue with that. So i took the day off to rest. that day turned into 4 days. no improvement. Called my doctor, got an appointment for next week friday.

finally friday, at my new doctor (i moved), listed my extremely long list of symptoms.

- bloating everyday

- a lot of irregular unpredictable abdominal pain, hot water bottle whenever i had the chance

- nausea, throwing up not holding anything down for a day

- constipation but diarrhea when period

- painful cramping during/ before period (feels like im about to pass out)

- fatigue. in my bones. heavy limbs.

- brain fog

- sudden depressive / suicidal episodes around period

- anxiety

- very gassy, abnormal amount of burping

- shortness of breath

- heart palpitations

i had gotten so used to these symptoms. they had worsened over the past year. but it had to come to this point for me to realise that its not normal to be in this amount of discomfort/pain. daily.

i think i totally overwhelmed my doctor. there was not have enough time to go through all these symptoms. i told her i was thinking of endometriosis and pmdd. she agreed: "it might be"

did bloodtest, fatigue maybe anemia. bloodtest came back perfectly normal.

still did not feel normal.

doctor said: there's nothing i can do because your symptoms are too vague. i'm thinking maybe depression? or something psychological

i've been treated for depression before, its the only thing on my medical record. told her i dont recognize these symptoms as depression or stress related.

i do believe i was working hard and that its been stressful for my body and it definitly worsened things.

but to write everything off to depression? i refuse. but maybe im stupid. idfk.

i was taking care of myself better than ever, i did everything i could to not fall back into depression. i got sick and was gentle with my body. not blaming myself. not rushing myself. feeling pressured by school, but i handled it very well. i asked for help and put school on pause. to focus on getting better.

after a lot of research i think pots might be causing a lot of symptoms and asked doctor for a referral. three weeks ago. still nothing.

i got prescribed birthcontrol pill (ethinylestradiol /levonorgestrel)

i was a bit hesitant, knowing its not a cure but to supress symptoms and hopefully help relieve some of the pain. i do want to give it a try. and its the only thing thats offered to me.

but now, almost 2 months in, i fear its making things worse. i struggle to get out of bed. sleep a lot. feel very sad. or just... hopeless? im anxious. suicidal thoughts. dissociating. isolating myself. my life is falling apart and i just watch it happen.

i dont know if its this stupid pill. or if this is just a logical outcome of everything ive been going through lately. im not attending classes and probably have to give up on school. i dont have any qualifications. no money. i would have to move back home to my chronically depressed and ill mom, she can barely take care of herself. i'll be just like her. chronically ill. chronically depressed.

i dont want to be like this. i reached out for help. im seeing a mental health coach. feel worse after every visit though. dont think he actually understands what im going through and i dont have the energy to explain myself.

i ask for help but everywhere i go i seem to be too fucking complicated. i can't do this for much longer.

Last night I believe I had an ovarian cyst burst but am not sure because I’ve never had one before:
My period is in a few days but nothing felt abnormal and I had not gotten any cramps yet.
My partner & I were having sex & I felt a sudden cramp in my cervix region. I tried to ignore it for a second but ended up doubling over in pain.
I was suddenly very dizzy & could not see well. I got the chills & felt faint. I could feel my blood pressure drop & asked my partner to get me some juice.
I had him walk me to the bathroom because I could feel the cramp deep in my cervix down to my butt, so I thought something might come out (nothing ever did).
I had to come back to bed because my vision got super blurry and it hurt to sit on the toilet.
It was the worst pain I’d ever felt (I’ve had multiple knee surgeries & have a higher pain tolerance), so I called my mom.
I eventually thought of getting in an extremely hot bath to try to help the cramp as much as I could.
After about an hour, I was able to get out but it was still hard to walk & move.
After a few hours, I was able to pass out for the night but am still extremely sore this morning (to the point where it hurts to walk and laugh).
Some of my girl friends said they’ve had ovarian cysts before and this matches how it feels when they burst.
I know I probably should have gone to the hospital, but I am currently without insurance and knew most hospitals probably would not take this seriously.

Does this sound like what others have experienced with cysts bursting?
Will the cramps subside after a few days?

Any and all helpful comments are greatly appreciated!

It took me three years to realize my OBGYN sucks. Granted I’m 15, so I see a pediatric OBGYN. Here’s all the things that mark me for endo: my mom has it, I have 14 day periods with extremely heavy flow and 28 day cycle, painful deification and pain when bladder is fully empty/emptying, really bad cramps on front in back that feels like being stabbed with blade, my periods would make me sick and have migraines and make me miss school. Anyway, onto why I think she’s bad… In January I was in for a pelvic exam and a refill on nuva rings. The exam was really painful. And I didn’t immediately convey that so my mom says I wasn’t in that much pain. (Not super important) but the ob said the entire reason I felt like this is because a muscle was tight and she thought I was constipated. So she only gave me three options: pelvic floor therapy, muscle relaxers, or an IUD. My mom says she lets me pick my own choices but didn’t like the options because she tried them and didn’t help. I’m just kinda upset that it’s all she offered. Maybe it’s just me.

Hi all! I am new to this sub and have been learning of the challenges that can come with endometriosis. Me and my partner are waiting for marriage before sex, but she has endometriosis. I of course love her and she doesn’t believe it will be an issue, but I am sure there would be a lot we will need to manage. Is it fairly expected that endometriosis brings pain / difficulty with sex or is there a proportion where it isn’t actually a problem?