Does anyone else just have AWFUL disabling back pain with their endo? Like genuinely I cannot move. Even lying in bed hurts like a fucker. Standing up, walking, god. I feel disabled. how do I even describe this sensation? It's like someone pulling the bottom of my spine, trying to tug it out of my back. it makes me feel so irritated and moody and on edge cause I cannot get anything done. No standard pain killers friggin work. Im so over this!!! I am going to have a breakdown genuinely.

Hi everyone,

Two months ago I had an MRI scan done which showed an endometriosis plaque covering the back of my uterus and tethering my uterus to my colon. I had a follow-up with the gynaecologist last week, and when I asked about next steps, basically told me to just take OTC birth control? When I asked about the adhesion, she said that laparoscopies are ‘no longer a standard part of endometriosis diagnosis or care’ in the UK and that the only thing they offer now is MRIs for diagnosis and birth control for care.

Is this true? I can’t find anything on the internet about laparoscopies no longer being standard diagnosis or care? My assumption was also always that if endometriosis is tethering your organs together that this is something which needs to be addressed via surgery? The gynaecologist is telling me that birth control can slow and reverse the disease, is this true because this is not the impression I got at all from research?

Thank you all very much and I’m very sorry for my ignorance in advance, this is all very new to me and I haven’t done a lot of research into Endometrosis, I was only recently diagnosed.

I’m about 5 weeks post laprascopic surgery and have a puffy bulge over the incision. Anyone else have this / know how long it might take to deflate/heal/leavemealone?

Hi everyone,

I am thinking about creating a community for people with long term gynae conditions looking for support with employment, based in the UK. It can include things like support with negotiating reasonable adjustments; sharing your experiences of working in particular roles and/or companies and your tips for being self-employed.

This idea came about because someone reached out to me on LinkedIn when my older employer was hiring my replacement. Because my old employer had me listed on their website, the person was able to find me LinkedIn and boldly asked me if I was open to talking about what my experience of working there was like. They also had endometriosis. I was completely honest with them, and they was very grateful. I was happy to talk about my experience, but I also thought- how many others would like to do the same, but can't, because they can't find anyone who used to work in the role they're applying for? And even if they do, if they don't have endo or another gynae condition, what they share might not be as helpful to you.

I want to create this community because I know that a lot of us struggle to stay in work, whether it's because of the demands of the role itself, or because your reasonable adjustments are not respected. I know the sense of anxiety when applying for new roles because you don't know how this employer treats people with long term conditions- especially conditions that are gynae related. Having worked for a company that was on the Endometriosis Friendly Employer list that was in fact not endometriosis friendly (for me), I know that what a company says they do paper vs. how their promises manifest in reality can be two very different things. (I did report this company to Endometriosis UK and suggest allowing anonymous reviews of the companies on this list and they did nothing).

If you are interested, please PM me and I will send you a survey that will ask about what you are willing to contribute e.g. the roles that you've worked in, companies that have good policies around sick leave or disability leave, flexible working; whether you think your experience was due to having a great manager or whether the company has good policies in place regardless of management. Equally, if your employer doesn't know about your condition, how are you surviving? I know not everyone tells their employer that they have a long term condition that has fluctuating symptoms, so I know some people will be looking for advice about how to manage without disclosing their health conditions.

The ultimate goal of the community will be to provide support around employment and hopefully remove some of the guess work and anxiety that comes with applying for jobs with a long term gynae condition. Thank you!

I’ve lived with pretty debilitating periods and chronic pelvic pain since I was about 16, with everything escalating pretty substantially after I had my kid. First discovered it was likely related to endo when I had emergency surgery for an ectopic pregnancy/ruptured fallopian tube and the surgeon noted potentially lesions but was not trained for excision/didn’t want to ablate because she knew that was not best practice.

Went to some idiot years later who claimed to be an endo specialist but was really just an OBGYN who does an occasional robotic surgery. He did an unmedicated hysteroscopy and biopsy on me, which were both clear, and then tried to push me to do a uterine ablation — which makes ZERO sense for endo, and I’m glad I did my homework and stepped away from that practice.

After years of clear ultrasounds and unresolved pain, I finally went to TGH-USF in Tampa, FL, and they ordered an MRI that found suspected DIE in the cul de sac and Dr. Emad Mikhail (an actual Endo specialist and researcher), was very supportive of my decision to have a lap to excise it and look for anything else.

Did that yesterday and the team at TGH could not have been more wonderful. It was a months-long wait for surgery, but got moved up twice. They were very responsive and communicative during the entire process. The pre-op and post-op care was a well-oiled machine and the team was so caring and helpful. He ultimately found Endo in a few other places (broad ligament and bilateral ovarian fossae) and took photos that he gave to my mom as well as sent biopsy samples to pathology. He explained everything he did to her in detail and also in the clinical note in MyChart (including staging of the disease), which helped me a lot when I was clear headed enough to put the pieces together after anesthesia. I also had a few questions and one of his medical residents came by minutes later to talk to me about all of them. They were supportive of getting me out of bed to walk to the bathroom, we’re not pushy or pressuring in any way, and discharged me both with my prescriptions in hand, a belly band and the surgical head pillow to use as a protector from the seat belt on my way home.

After what has been such a long, discouraging and painful experience, they really made everything seamless and made me feel confident I was in the right hands going in, and didn’t leave me with more questions than answers as I’ve become conditioned to expect.

If you’re on the fence about a lap, I recommend it as imaging almost never tells the whole story. I can’t recommend Dr. Mikhail and his team at TGH-USF highly enough if you are looking for the right specialist for you.

I am yet to be surgically diagnosed so I take my clinical diagnosis with a grain of salt but I had the worst (what I believe) to be ovulation pain/flare last night.

I nearly drove myself to the ER but I was afraid I wasn’t fit to drive as it’s an hour away.

It was intense stabbing and lightning pain up my - well - bum. I used to get it up my vagina a few years ago when my pain was at my worst but since having children it’s subsided. This was new.

Extremely bad ovulation pain paired with lightning pain up my bum. Is this endo related? Has anyone experienced this with a diagnosis?

On 2/6/26 I had my first endo lap at 22. The surgery was extensive they needed to bring someone else into help. They found stage 3-4 and my bladder was the most affected. Unfortunately surgery made everything 12000x worse. I bled every day no break (I’ve been on every bc this time the mirena IUD nothing helps) I have had outrageous cysts, GI issues, and bladder problems that completely took over my life so I fought for a hot minute to just make the bleeding and the pain stop literally just anything.

Last Wednesday 10/7/26 I had a full hysterectomy that turned into an extensive endo excision and appendectomy. I’m curious to know if anyone else has had bruising and scars similar to mine at 9days post op. I didn’t realize until I compared pictures how crazy my stomach looks and how I had minimal bruising from my surgery on 2/6

( I haven’t had kids or been pregnant the even though it looks like it my swelling and pain from the last year wrecked the outside of my body too)

I’m not sure if I even have endo, but I’m see a gynecologist soon. I’ve been diagnosed with IBS but I know that’s a blanket statement. My colonoscopy in January was normal. But for months I haven’t been having this issue until the last couple weeks. I get constipated and don’t poop for 2-3 days and then I get the worst diarrhea because it can’t come out because I’m constipated so it’s super painful. I haven’t changed anything in my diet so I am not sure why I’m having this issue. I have horrible periods sometimes. Debilitating cramps and heavy bleeding and some months are okay. Also I have horrible ovulation pain every month, pain where it hurts to walk, or put any pressure on hip area. It feels like a knife is lodged into my hip and just hanging out. It lasts 1-3 days. Also I’ve been having horrible facial flushing everyday?! Idk what is going on with me, but I am going to call the doctor tomorrow and schedule an appointment for Monday. 😭

Just a bit of background I have stage 4 endo, adeno, mcas, pots, audhd, and lifelong depression- I've had one excision surgery so far and my current pain management is weekly lymphatic drainage massage, pelvic floor therapy, weekly chronic pain specialized yoga training, a TENS machine, and most importantly Targinact 20/10 on flare days with 20mg of oxynorm for breakthrough pain (plus an increased dosage of my vyvanse on pain days). I see an endo specialist, a chronic pain specialist, a chronic pain focused physio, a womens health specialist, a psychiatrist etc.etc. Basically I feel like I'm doing EVERYTHING I could possibly be doing but I'm still absolutely beaten down by endometriosis- I feel like I'm at a total standstill with treatment options.

Today I came across the Samphire Headband on Instagram and I've been reading about it a bit but I can't seem to find many long term users who aren't also giving out discount codes which makes me a bit hesitant.

hello! i (f23) am getting surgery for the first time for my endometriosis in december. i had an mri done in july that revealed the following:

“T2 hypointense material along the posterior aspect of the uterus, tethering the uterine fundus to cervix and posterior fornix of vagina. This could represent endometriosis. Material extends more towards the right, where is it is inseparable from the right ovary.
*** ***
Suggestion of endometriosis along the posterior peritoneal surface bilaterally and right uterosacral ligament, possibly the left as well.
*** ***
No endometrioma. No MR features of adenomyosis.”

this is my first surgery for endometriosis, i’ve had surgeries before but they were very minor or i was a baby, i haven’t actually been through a full post-op recovery. the surgery i’m receiving is a laparoscopy with excision, and i’m with one of the highest regarded specialists in advanced endometriosis excision surgery in my area. i feel really prepared going into surgery, not so much what recovery, comfort and the other side.

so here’s my questions:

before going into surgery, what would you have liked to know about the post-op recovery?
what helped in recovery?
what would you have wanted for your first surgery recovery?
what didn’t help in recovery?
did your recovery timeline match what your surgeon told you?
any other advice!

thank you so much lovelies 🩷

Are their any women in here who have both HS and Endo? I’m doing research around how both are caused by inflammation and potentially histamine related and gut too? I’m seeing an Endo specialist at a research clinic next month and I’m just looking for any additional insight.

Hey all,

This is a far longer post than I thought but feel like I’ve been holding in so much from what feels like being robbed of a life… and the lack of awareness and misunderstandings around endo and PMDD makes me want to screammm.

For me, I am realising that endo could explain a long history of unexplained symptoms, ineffective surgery and pain. I saw a consultant yday who confirmed all my symptoms align and I am now waiting for a scan and looking towards a lap.

Over the past 7 years, PMDD has ruled my life: I have changed everything, sacrificed loads and begged borrowed and stolen to get to the point I can just about manage my symptoms (although anyone who really knows it will know the massive costs this comes with).

All of this has meant I have not had the capacity to look at so many other symptoms that have been lurking in the background. Have I always had painful heavy bleeds, ovulation pain, crippling fatigue, general soreness, unsolvable GI problems and the occasional flare up that’s made me scream and cry from pain - yes. But within the rollercoaster of huge ups and downs I get every single month, these were all still marginal compared to PMDD and how much it takes for me to just keep going.

Now I finally found ways to manage PMDD, I’ve put everything on the line to move to a small piece of semi off grid land for my CIC I set up to support women with menstrual-mental health problems. Because imo, we are some of the strongest out there and at the same time most denied/ ignored/ isolated. It’s the fire in my belly and a big reason I keep pushing.

After the hardest year of my life, the stress has made it impossible to ignore these worsening symptoms and I’m finding myself in pain a lot of the time. Over the last month, it’s got a bit out of control because of a holiday in France for my step bros wedding. I gave up holidays ages ago because my cycle made booking anything outside the next month impossible, and actually going on one has effed me up more than I could have imagined - just a week out from my PMDD management (which consultant confirmed would have also been keeping endo at bay) and I have been in severe pain for most of the past month. Unable to work on the land most the time, having to call in sick to or leave my PT second job as a waitress and basically unable to do anything towards the whole reason I’m here - supporting women and marginalised genders. The ironyyy 🤢

Apart from the physical pain, what I am finding the hardest of this is the realisation that if I do have PMDD + endo, I will not just lose my two ‘good’ weeks of the month I have clung to for years, but this colossal move will be in vain and I will ultimately have to accept I’m too poorly to do much at all. Give up the land, go back to living on benefits despite being very competent at my job and highly educated, possibly without my current partner who is struggling with it all and making things worse, or a child (as that window is closing) or the community I dreamed of creating and back to just clinging on.

With these worries has come so much anger. I have constantly tried to rise above for so long but feel so beat down and enraged at the world that these two DEBILITATING conditions are not incurable because of anything other than we are women and they simply haven’t ever cared. (TW) They only care to look and stare, and grab and touch, use and abuse - lots of the time while I’m fighting back tears from the mental and physical pain!! And then when you finally breakdown, there’s no one to actually talk to really bar online groups and forums cos when you say pmdd or endo, people hear pms and period pains!!! If people even knew what these conditions feel like and take from you and yet I have to stand there and listen to people complain about every day shit and show compassion for my parter getting a cold or having a bit of a dodgy tummy!

How do you all do it? I hate feeling sp hateful and know if anything these feelings will make the PMDD and endo worse, but fuck me dead, finding some peace in it feels so out of reach. Sitting and mediating, no. Painting the streets red with our blood, yes pls.

(For context, I am also audhd and I know this will be making my difficulties of fitting in or finding ways to get on with people whilst struggling mentally and physically/ general rage about the lack of justice in this worse. Pls be nice :))

Surgeon seemed surprised I'm still having crampy sharp pains after 3 weeks, but said it can take 3 months due to inflammation. I had "a lot" of stage 2 excised, salpingectomy, and cut down bowel that was adhered but not with Endo (born that way?). This is normal right? I did overdo it with activity recently but it's still normal to not feel significantly different right? Incisions are fine, just sore if I press on them. I of course only remember extreme stories of instant relief or feeling worse forever after surgery so idk if I should be concerned.

I had my lap yesterday and he said he found stage 1-2 endometriosis.
I’m so thankful and lucky I had a doctor that believed me and also takes my insurance.
He is a endometriosis specialist.
I’m on my second day and I can’t tell if I already feel better or (maybe it’s the drugs lol!$ but no gas pain so far.

I started to cry right before being knocked out and my doctor held my hand saying “you’re going to be okay, you don’t deserve this pain at all, you’re going to do great” it really helped.

his teammate was also softly rubbing my arm and telling me to take deep breathes. That’s when my Doctor made a quick joke (I forgot the joke but I do remember laughing) well, his teammate (women) said “haha he thinks he’s funny! “ I said, “most msn do” LOL had to throw in a risky joke before being knocked out but thankfully they both laughed quite a bit..

Too all the women/ people that reply here in this subreddit
I wish I could say A special thank you to everyone here. Answering som “stupid questions” or sharing what you learned, how your experience went.. you’re all helping more than you’d know!

Forgive my spelling and typing, I’m still on drugs with blurred vision..

I’m supposed to go on a girls trip next weekend, exactly 1 week after my laparoscopic surgery. Today is day 2 of recovery. I don’t have my follow up with my doctor until Monday the 26th so I haven’t asked her yet, but I’ll likely call her to see what she says. The trip would be a 4 hour drive away, staying in a house with 5 other girls, possibly sharing a bed, and going to downtown Nashville. Going out to dinner and walking around a lot. Does this sound like it’ll be doable for me?

Those of you who are on tirzepatide and had surgery, when did you stop the medication before surgery? Is one week enough?

That’s all! I’m recovering from laparoscopic surgery and they found all the endo, excised some of it, and I am sooo happy that they know I wasn’t being "dramatic" or "weak" when it comes to pain (or just "imagining it").

The doctors who didn’t believe me can shove it! Because it was THERE, all along it was in my body, and I wasn’t dramatizing my condition! I was really getting into a dark hole about ever being diagnosed (confirmed endo), and thought I’d just be considered "crazy" forever.

So while I’m still REALLY sore, I am happy that I have answers that I can throw in the face of any future and past doubters who have made living with this disease 10x worse. And going forward they can’t deny my pain or quality of life.

I had a Pap smear about a month ago. I do a lot of pelvic floor PT so the exams are no longer unbearable like they used to be. My regular GYN isn’t the endo GYN I do regular check-ins with, however, she’s very familiar with endo. So, after the pap sampling, she felt around quite a bit for scar tissue (very sore in the scar tissue spot) and I had been complaining about scar tissue pain when I try to do any squat-like exercising.

After the exam I felt really sore, fatigued and nauseous going home and cramping for about 2 days.

Since then I’ve had a lot of on and off pain VERY similar to my endo pain which I haven’t had since surgery 1.5 years ago. I’m also having the same pain flaring for 1-2 days after pelvic floor PT. Is this normal for anyone else??? I’m scared my endo is growing back but I literally haven’t had any signs since my excision until now 😩😩

I see a lot of people post about not seeing anything in their MRI but then uncovering endometriosis during surgery.

I got my MRI results back and I was shocked to see something since so many people don’t.

What have your surgery experiences been like for those who have seen endometriosis in your MRI? Was it a long surgery? Did they do more or less than you expected?

To summarize the findings for those interested:

My MRI confirmed adenomyosis and deep pelvic endometriosis, with significant involvement in the middle and back of my pelvis and numerous bands of tissue in the space between my uterus and rectum. The uterine wall is abnormally thickened, measuring up to 16 mm in the junctional zone, and both ovarian walls appear thickened, particularly on the left. The endometriosis extends toward the rectum, but no definite bowel tethering or obstruction was seen on the MRI.

*the first time adenomyosis was ever mentioned to me was at a consultation with an endo specialist 2 weeks ago.
I had a laparoscopy in 2023 and there was no mention then.

I am so fed up yet sad being stuck like this I had a appointment to get my wisdom tooth they had to check my weight and hight and I since this has gotten worse I have gained 3.5 stone I am nearly 11stone

I have had raynards syndrome since I was two yet i have always been naturally slim and since this has started more from 2021 and then it all went down hill with my health and all the symptoms of endo started but endo was dropping hints when I was younger like being sick on my period.

now it’s 2026 I am stuck with a frozen pelvis,endometriosis with die that is stage 4 non stop water weight and infermaltion,joint pain,lack of sleep,spider veins all due to this and on top the doctors notes say I have to wait till June 2027 just to say I want surgery from my follow up when they told me my options I just want to get the ball rolling I hate how I feel and look atm I just want to get myself somewhat back.

plus also now I may need nose surgery too due to one side of my nose being odd that it is causing me infections.

and also the endo is messing with my scolioses which is in the middle of my back around bra strap area and due to the frozen pelvis and die I have lost a inch off my hight which sucks.

sorry to rent I think just finding out about my weight today and with all the water weight and ect and just a waiting game,I am so greatful for people I have talked too and meet on other platforms but it’s just hard sometimes 😔😢

natural real hight is 5’6 1/2 atm I am 5’5 1/2

i have a natural petite slim frame due to rainnards syndrome

I have mild scoliosis,rainnards syndrome primary since 2,endometriosis stage 4 with die,frozen pelvis

I am so tired of the bladder pain and ridiculous constipation it seems like nice laxatives don't help as much. They never mentioned anything that I remember on my bladder but they mentioned one section they couldnt get rid it on my bowels from where it was ... anyone experiencing these things as wwell? Any advice?

Hi everyone, so a little back story I was diagnosed with endo via surgery last December. All of it was removed aside from a spot on my ureter. I had relief for maybe 2 months. Chronic pelvic/ back pain came back along with all the other symptoms. And I developed extreme pain behind my ribs. I’ve mentioned it to multiple doctors and they say because during my first lap they looked at my liver it’s definitely not my diaphragm. But I’ve had an MRI, CT scans and nothing is showing up. So I don’t know what’s causing this. I also started Slynd 1 week ago and it’s made it worse(maybe my body is adjusting?) But does anyone have a similar experience or any advice as to what that could possibly be? Thank you so much.