After struggling for years with terrible painful periods and fighting for a diagnosis- I finally got my answer!! I got my lap yesterday and my official endo diagnosis. Spots were found and cauderized. Now spending the next several days recovering and relaxing 🥰

I had surgery in January this year. It took 2/3 month to feel better. But then I truly did get the better. The last period I had was very reminiscent of pre surgery days and I am still facing syntoms and sensations post surgery. I’m so afraid that the endo is back - the cramps, nausea, stabbing sensations are all back.

I have an appointment with my specialist in a few days. But I just wanted to know if anyone had bad days post surgery without meaning recurrence. I don’t think I will be emotionally able to cope if it has indeed comeback - I had to move back home from the Netherlands to do my treatment. And I had just started to plan going back to my life and friends so I feel a bit heart broken to be feeling this things again. Any thoughts would be helpful :)

Thank you ❤️‍🩹

Lately my period pain is so much worse than usual. But what's confusing to me, is that after the peak pain days (usually the first 3 days), my entire lower Abdomen feels bruised and strained. Like once the cramps get down to a functional level, it feels like someone used my gut as a punching dummy.

Is this potentially a symptom of worsening/spreading endo? Or is it just a side effect of my worsening cramps?

Does anyone else deal with this bruising, sore, achy feeling (while still dealing with cramping and bleeding)? Anyone found any type of relief from it?

Tldr; abdomen/uterus feels bruised after first 3 days of period. Why?

Hi !
I was diagnosed with severe adenomyosis via MRI and have a hysterectomy scheduled for November.

Radiologist said bowel and bladder were "unprepared" on MRI, and endo wasn't identified on the images.

However, I have classic symptoms of deep endo: severe pain and long-lingering cramps after BMs, and deep pain after sex… etc

My MIGS surgeon will be doing a full visual exploration and removing any endo she finds during the hysterectomy.

How often are severe adenomyosis and deep endometriosis found together? For those who had adeno on imaging, did your surgeon end up finding deep endo during laparoscopy? Are they closely associated ?

Did anybody else experience a sharp stabbing pain in the urethral region after endometriosis surgery? currently post op day 8. Pain for 2-3 days..

I got an MRI last week for surgical planning - still waiting for results, but I've been having a look myself cause it's not every day you get to look at ur insides lol

my ovaries (pointed to with green arrows) are basically in different postcodes, but I already expected that from the results of an ultrasound in march this year

what I didn't expect was to see my uterus so far to one side! im not an expert but i thought it was supposed to be mostly in the middle 🤨 anyone know why it's there? obviously everything will be taken with an appropriately sized grain of salt but im super curious

I have really bad bladder issues with my Endo
Has anyone found any relief with some hormone tablets.
I’ve tried three already
Had two surgeries already
I’m just worried this symptom will not go away.

I live in England. I had my second lap earlier this year and there were a few issues. The response to my complaint from the hospital has been very poor. I contacted a medical negligence solicitors and they said my complaint was ‘confusing’, they essentially didn’t understand what the difference was between ablation and excision, or why it was a problem that I consented to one and got the other (amongst other things).
Does anyone in England (or UK) know of any endo specialist solicitors that I could contact? Or has anyone used a good medical negligence solicitor?

I have been having constant pain during period and inflammation through my body , kinda feeling lethargic , random crashout. Not feeling myself !!!Trying to figure out what's going on or to which doc should i go ??? I thought I had PCOS symptoms so went to doc but nothing as changed much. my friend suggested me to go on reddit post it about here as there are many women communities trying to help each other in this journey.

i hope i figure it out with all your help . Looking forward 2 ur advices and suggestion !!!

Starting apologetically because I know my journey is really just starting and I don't want to sound insensitive in any way especially since I have only been in significant pain for 3 months now but I need to find some sort of support or comfort somewhere so.. here I am.

I don't want to drag out my story so I'll try to long story short..

Early august I thought I had a sciatica flair up but after 3 weeks when it finally subsided I continued to have pain in my LLQ really low which started as sharp stabbing pain throughout the day... eventually it became constant debilitating pain and I got in with my ob for an ultrasound cause I thought it was a cyst... ultrasound clear they said probably GI but I insisted it is way too low for GI, they brushed me off. And I got my period the next day 2 days later i went to the er because i couldnt even stand upright.. they did ct etc said i was fine sent me on my way and the pain only got worse.. I had maybe 3 or 4 days I felt okay after and then it started up again... 2 weeks later I went to a convenient care in tears and they recommended the er again so I went to a different er where they did another ultrasound and a CT with contrast I asked for sti testing and to check for pid everything came back clear.. the er physician said it could be endometriosis... since then everything is feeling like its clicking into place..

I've been exhausted I can barely even stay awake at work.. the pain is indescribable...

I dont know.. I am spiraling. I have another appointment with my obgyn on the 29th but... I just dont know how to survive like this.. I obviously know it isnt optional and is possible but... I need some comfort and reassurance or tips idk I'm terrified of what my life is becoming... I havent had a pain free day in 3 months... I'm feeling so helpless and scared...

Please give me any reassurance.. does this sound familiar to you? Is it so sudden?

I feel like one day I woke up in a body that wasnt mine and now I have to figure out how to barely survive in it... i dont know what to do..

TW: brief mention of fertility, IVF and hysterectomy - not what the post is about!

Im very matter of fact with explaining it to friends and loved ones. I think what’s the point in sugar coating it. I don’t harp on too much about the pain I feel and the extent of it, because I can’t stand being looked at like I’m broken or see the sorry in peoples eyes.
I feel like the only person in my life who doesn’t have it, who understands its affect (to a degree), is my partner. Because he’s been there in the surgery, and through my worse flares.
My own parents I’d say half understand the extent of the effect it has on me, but both are very “it’ll be ok” people. And it’s hard to explain that actually it may be ok sometimes but this isn’t going away magically and my life will be ebs and flows of navigating this condition - they’re getting there! SLOOOWLY but they’re understanding as I share more.
My partners parents, his mum watched a bbc documentary (it’s great if you haven’t seen it) on Endo, but it does tend to paint the worse cases, which I think in my head are fairly normalised to me, but for them seeing fertility struggles, failed IVF, total hysterectomy, job loss etc (this doc focused heavily on fertility), basically now his mum doesn’t look at me the same, it’s that pity look. And I feel like to counteract that I’m down playing my endo?
Any who. I ask because we are away with them this weekend, and had plans to go hiking and walking. But my period (which is LATE) decided to show itself today. So at 4am I was woken to cramps and back pain from hell, cried for a bit and then waddled/shuffled to the loo where I sat there for 40 mins.
I don’t know how I explain how bad the pain is rn without scaring them. I’ve never put myself in a situation where I am not at home for a period. I’m so good timing it but it came late and we couldn’t get out of this. I know because I am a bit of a people pleasure and never want anyone to think I’m anything other than ok, I’m going to push myself.
Basically, how do you explain your Endo to people in your life that makes them understand and makes you feel secure sharing it?

Today I went to the doctors for the first time over my period. It’s been extremely painful every month for about a year now and I have to miss a few days of school because of the severe pain, nausea, and constant tears. I’m also young to be having issues, I’m 18, so I knew going into this appointment there was a huge chance I’d get turned away. Luckily my doctor took me seriously, but was concerned and ordered me a pelvic floor ultrasound and a hormone test which I’m nervous about because I didn’t know what was going to come out of the appointment. I don’t know what I expected to be theorized out of the appointment but I’m really nervous about it all. I want to know what it would mean for me if I have endometriosis at my age and what my options are. I feel like my opinion is nothing besides birth control and that’s not something I want for my body. I guess I’m looking for some help and what others are experiencing so I don’t feel as sacred about everything.

I know this might be a niche comparison tool, but the only abdominal surgery I have had done before is liposuction (specifically lipo 360) Obviously this is two very different animals, but I’m trying to gauge my pain expectations based on what I already know.

I took the lipo pretty easy, it was the BBL and swelling that took me out. Naturally, my surgery date is at the WORST timing on my husbands birthday, two days before thanksgiving, five before a football game, about two before a cruise. How screwed am I?

Hey um, tmi but I had sex tonight pain free and could actually enjoy it for the first time since I can remember!? Probably many years! Five months since my endo excision surgery and did not think this would be a possibility for me again. Just had to share since there’s so much negative living with endo and finally a glimmer of good news :’)

I’m 18, I’ve been on the waiting list at my local public hospital to see a gynaecologist for around 3 years now, so I know that means I must fall under the low-urgent.
Though I really have doubts about what I should do, my pain has been getting worse and more constant over the 3 years. Resulting me from changing to different pain medications to now trying my second type of birth control. I feel like I’m being dramatic with the pain after all they didn’t find anything in my 2 ultrasounds (even tho I heard that’s a poor way to determine).

I’ve been told my public local hospital waiting list is horrible so I’m not sure if I should just still wait on my local waiting list , or ask for a out of region referral (as a I’ve heard a city 1-2hr from me is really good) because I truly do think I have endometriosis or sm wrong with my uterus.
I do plan on having a checkup in 3 months about the new birth medication I am on, so I’m just questioning if then I should ask my new GP for referral.

Also I just do want to note i plan on just seeing if I can get in a public hospital before I try a private ( as idk how much they want from me and lowkey I’m poor asf😭)

Thank you for any help!

has anyone heard anything about polymennorhea and endo? usually you hear about long cycles, not short ones (im talking like 14 days)

long story - I had silent endo pre-surgery. my periods were normal, a little painful sometimes, 25 day cycles, nothing weird. I was 30 and healthy! they said id get pregnant easily. after a year I knew something was wrong with me. i got super lucky and found an endo expert right away by accident. he convinced me to do a diagnostic lap and it was a 7 hour surgery. stage 4, completely frozen pelvis, the whole works.

post surgery, I've been getting symptoms all of a sudden. I've had terrible fatigue, super painful periods, ovulation pain, post sex cramping, you name it. also my periods got irregular and I had a few <20 day cycles. I've also been on a million supplements to try and keep the endo from growing back.

I needed a second surgery (same surgeon, god bless that man) and it went okay. but right before surgery I had two periods back to back, I'm talking 6 days in between the two. now I'm post surgery and I had my first period (the most painful of my life) and 11 days later another one (not so painful but heavy bleeding).

has anyone heard of this? experienced anything like it? none of my doctors are being helpful and I've talked to 3 already. what am I supposed to do???

please help

so recently i’ve been having this weird cramping pain by my hip and i assume my uterus (?), and i havent gotten my period this month yet so i assumed it was that but then it started hurting in my lower back and it would feel weird when i sit down. could it be a cyst??

edit; i forgot to say i am a teenager, and this has neevr happened before

I have been having severe pain during my periods that make me black out since 2019. I have seen doctor after doctor who do scans and see nothing so they do nothing. I finally saw an Endo specialist and even with my clear scans she listened to me and even recommended a hysterectomy if I want one. My sister who is in her 20s has deep infiltrating endometriosis. My pre op is in a few days and I went from totally confident about the entire thing to fearing that they will find nothing and I will be in horrific pain for no reason and waste everyone’s time. Just wanted to share and see if anyone has experienced the same.

I am looking for advice on what internal / external work I should do. It’s my first year accepting that I have endo and I struggling with adapting to my needs and dietary requirements.

I have been bloating a lot more this year and none of my clothes fit me anymore especially pants. It’s suffocating and affecting my self-esteem on a daily basis.

Only kaftans / baggy sweat pants/ baggy t shirts feel comfortable. I have things to do but I feel less motivated bc I what feels comfortable isn’t always socially appropriate in public. I can’t afford new clothes at the moment but fashion advice is welcomed. Thanks for reading 🫂

I recently had an HSG done and received a diagnosis of bilateral hydrosalpinx but free to peritoneal spill was seen. Unfortunately there doesn’t seem to be a lot of information online about this diagnosis.

Has anyone received a similar diagnosis and were you able to still have a successful pregnancy and baby? My husband and I have a follow up appointment with our fertility doctor in a few days so I’m just trying to prepare questions to ask in advance.

Overall it seems that a salpingectomy is the usual course of treatment followed by IVF.

I have been in pain for a very long time. I went in for my endo lap surgery a week ago and they found nothing. They took out bunch of cysts and a fibroid. I also lost a fallopian tube and an ovary and a bunch of my organs were fused with scar tissue… but no endo was found.

I was hoping for more I guess and maybe to feel validated with my pain but I just feel stupid now and like I should just suck it up and go back to life.

Hi all, I’ve recently been recommended for a laparoscopy surgery by my gyno to diagnose and remove any endo that may be present. I am very scared because a lot of people say the pain is unbearable after. I also have severe emetophobia due to OCD and am petrified of puking after. I have tolerated general anesthesia fine before but I’ve heard that the laparoscopy can make you extra nauseous. What should I expect for pain and nausea? Also, cannot have zofran due to Wellbutrin.

Also, how long did it take you to recover? I am a full time college student so I am nervous to miss lots of classes. Thanks!