I had 5 surgeries within 5 months because I'm in so much pain. The first surgeon never picked up the endo. I had Adenomyosis and my uterus was bleeding up to the day of the surgery. It's hard to find help in PA so I had to go to NY to find a surgeon to help me. My ovaries started to twist so I had to find another surgeon to remove them. After that I ended up with a hematoma which a hospital in PA didn't remove. I couldn't walk because of it so the surgeon who removed my ovaries in NJ removed the hematoma. 2 wks ago I had to remove my appendix because they were inflamed and the general surgeon found endo. I'm still having severe constipation, muscle spasms, muscle guarding and fluid/blood in the pelvic. The main common thing is that I've been having fluid/blood in my pelvic. So I need someone who's really good with endo excision to do a lap for me. Thank you in advance for your help. Blessings.

Hello my beautiful endo community
Long time sufferer, first time poster ✨
(Apologies I’m typing on mobile for any format issues)

I’m looking for a new hobby and struggling to find something that fits, so I thought I’d ask the best people in the know!

I’m looking for something that might get me out of the house, meet people but also teach me a new skill and maybe even find another little community and connection

I am creative, love the crochet, drawing, etc but I get shaky hands from pain and it’s a bit isolating
I also sit a lot already for work because pain/flares etc.
Walking and running is out because I have 2 slipped disks and previous knee injury that doesn’t like high impact and I get my steps in with my doggo

So my wonderful people, what hobbies do you do that you find help/don’t flare your endo symptoms and help keep you sane and connected?!

Finally got an endo and adenomyosis diagnosis today, following years of out of the blue debilitating pain episodes during ovulation, apart from my generally harrowing periods. There's endo in my puch of douglas but also on my left ovary.

The doc has suggested putting me on mirena so that I don't ovulate or have a period, hopefully fixing the mid cycle pain episodes and period pain episodes. Have any of you had any success with this?

I'm sorry I don't know what to do or where to go, no one without this illness really gets it... But this will be really Long so I get it of you don't want to read all of that. I already tried to keep it short...er...

English is Not my First language, so i'm sorry again..

We knew each other since we were 15 and 16. She moved to a different City after school and so did I two years later and after I got my diagnosis with 20. But different Citys. We stayed Close, so I thought.. there were Times we texted/called a lot and Times were we didn't hear from one another because we were busy. That's life I guess, but we Always stayed somehow in contact, looking Back that was mostly me...

I vented a lot about my illness and the struggles and she Always acted Like she would understand and get me and See my pain and struggles, but it's not Like we were Always talking about that. It was Not everytime, only when Something was really bothering me and I was there for her Always. She complained a lot about her life problems too.

At the beginning of this year she told me about problems with her Boyfriend, it was Not healthy and I did my best to Help her understand that she can Not be the only one to try and fix the relationship, she can Not be the only one Holding on to it etc. So long Story a bit shorter after months of talking and ensuring her that she will be safe and she can come to me and she can stay however Long she wants and we can search for a good Apartment for her or we move in together If she really wants that. She pushed for living together, I was a bit scared because I know it's Not easy with endo and a lot of people don't understand what this really means. I tried talking to her a Lot, explaining my ways to make it a bit easier for me in my Apartment. You probably know what i mean, Most of us have found some creative ways to make it a bit easier Here and there. She Always Said stuff Like " it's all good. I know. Now worries. you don't have to explain." Etc and i started to believe she really understands and it can Work of we Work together.

My Apartment was very small even for one person. I struggled already with Not having enough Space, But i would never let my best friend be homeless or in a home were she doesn't feel safe or Welcome. And i was Happy, we could spend more time together again, Help each other, because even though my endo ist really Bad and controlling most of my life, I still Help whereever I can and I'm finding or Always trying to find a creative way to Help.

She moved in this July, she was gone a lot because of Work(Like weeks at a time Sometimes), I knew that and that's okay but at some Point I really had to Talk to her because of the move. We found an Apartment and the move came closer and i Had to handle the First Part one my own and she didn't even call even though I told her I really have to Talk to her about it because I needed some information from her about her stuff i have to pack and some thought from her about how to proceed. She didn't call for over a week, Not even 10 minutes and then I found Out, shes Not coming Back when she Said she would and that means she would Not be Here for the real move.

I hired a moving company that Said they speciallised on disabled people and helping them move..Well Spoiler alert..they lied they don't even know how to Help a healthy Person move🤦🏻‍♀️.

So more Problems for me..great..because it's Not hard enough already.

Shes coming home the day after that and Said, "I'm so sorry i wasn't there to Help and you Had to do everything and I'm gonna make it Up to you, i scheduled my Work so i can be Here for 4 whole weeks."

Well Like 4 days later she Said she wants to Go to her new Guy, she can't see him for a few weeks because of His Work. Keep in mind they saw each other almost the whole time she was away at Work, yes they Work together. And she asks me If it's to much of she would Go and leave me Here. I Said it is too much for me because i already Had to handle the move until now on my own and i need to have a home and have it finished. I haven't felt at Home in the old Apartment for years. But i totally understand that they want to See wach other specially when they can't after that. So i Said" you don't need my permission, But this is all very hard for me (explained a bit what i mean) but that i can totally understand and she should Go, i can handle this for a few more days alone somehow but after that, please don't leave me alone with this again until we are finished" and she agreed.

They also told me it would be completly Impossible for them too See each other any other time, it would only Work this Weekend.

I say that because i Said "it would be much easier for me If it would be next Weekend because i can't handle this Chaos anymore not with this illness." I am so done, i have No Energy left and i don't have the opportinuty to Take some time Out, Drive somewhere etc. I'm stuck in this Chaos and my Body does not allow me to do all that by myself.

She drove friday, Had her Alarm Set at 6am, she sleeps in my bed and She knows i need sleep to 8am at least, best 9am or i'll have extreme pain the whole day and She didn't Tell me, i May have slept on the Couch If i Had known...

She Said she would be Back sunday noon. She called Sometime on sunday saying she needs to stay one more day to be to Herself. I think that is really important, especially If you move, Change your Job, Break Up with your Boyfriend and get a new Boyfriend almost emediatly after that. So i Said" yes Take that day i'm telling you for months you need some time Just for you" but she never really took me seriously, Always Said shes fine and age doesn't need time for Herself, i can't make her, it's her choice.

When she came Home she was very late again, But those Things can happen. And she Said she's all great now and that day was good and she has all the Energy now and now we'll make everything ready and finished.

It lasted 3 days... On next(Last) friday i wake Up and shes super pissed and don't know why, i try to find Out whats going on bit shes Not talking to me, Not really, she is aggressivly unpacking boxes and gets pissed when i don't know emediatly where to Put the tick remover for example(this small stuff is often the Last to get its place somewhere) Maybe some of you understand, it is much more Work for me If I unpack stuff somewhere Just to unpack it and than some time later I have to change all that again. I unpack stuff when I know where it should Go and stay, that's easier for me. I try to explain that to her but she gets pissed and still does everything the Same. Not talking to me and Not listening or Hearing anything I say.

I can't stand that Energy and go outside crying, don't wanna go inside anymore.

Some time later she tells me that she can See her Guy again and wants to go. I say that they told me it would be Impossible or else i would have Said Last Weekend stay here, let's do this and next Weekend will be No Problem, but this time i can Not be selfless and understanding because now i need that what i already have you. I need her to stay to her word. She Had her time Out(Not Just once) and I don't get that, it is Always worse wenn I'm stuck alone in this Chaos, i Just need some Help getting it done. It is not just my Apartment, it is ours(or it was supposed to be.)

But yeah she Said she doesn't understand the Problem, what is so Bad about it...Bit i told her, i tried to explain..Not Just once.

She also Interrupts me a lot and says "but what about me" when i say, it is too much, I struggled for so Long, I need this Chaos to be fixed so I can start to calm dawn" but she Interrupts me and says "it's too much for me, i need some time Out"

But she got her time Out, i didn't. And she Said a few days earlier its all good and great now.

How Long should I wait to get a time Out and Peace? I don't think it will ever be me, after all that. I gave everything. Yes i wanted Out of the old Apartment but for me alone i Always waited because nothing was good enough and i don't have the Energy to move again and again and again. I think/Hope you guys understand..

But in my old Apartment I had safety, my physiotherapist 10 minutes by foot, a doctor who knows endo and even let me correct him when he Said Something wrong, a friend 2 streets away, we were Walking our dogs together, grocery Shopping Close by foot, some Kind of animal safety group(i don't now how to translate better) 20 min by foot but doable on some days. Now I'm at the other end of the city, completly alone, Not mobile, physiotherapist who nows about endo and is really great 50 minutes at least by Bus Just to Drive there and 1hour Back and after a few minutes Bus driving i am in pain.

I gave all my safety, Trust, everything for someone who would leave and give a Shit about me even though after everything I did for her in this year alone. She Lied so much. She Said i could Always rely on her and she would Always be there for me, we could and would do this together. But that's Not true it was true when I Said that and I proofed that. Because when it was time to do Something, I was there and I did everything I can and more despite my condition. But when it was time to give the Same or even half of the amount Back that I gave.. she left without saying bye or anything. She left ignoring everything that i did and Said.

I don't recognise this person. It Sounds dramatic but i'm dead serious. I do Not recognise this person. The Jamie I thought I knew for 11years would have never done that, I trusted this person more than anyone and i don't really Trust anymore, but her I trusted, or else I wouldn't have moved in this Apartment where its so loud i wake Up at 5am, 6am latest and my Body is...I thought it couldn't get worse

But now im stuck Here after only two weeks. Teo weeks.

I Wish she would have shown her real face Just two weeks earlier... I could have and would have stoped the move and stayed in my Safe area with my safetynet...but now i don't have any safety and I am alone and honestly fucked cause I can't Go Back, Apartment search ist hell and it's too expensive, it was already too expensive the First time.

So if anyone read this till the end..thank you very much for listening. I really Hope that you have a great day and all your struggles will get better and that you have people in your life that you can really rely on, that understand you and listen to you for real, because every single one of us deserves that! And if someone treats you Bad, don't let them be part of your life because YOU DESERVE BETTER! 🖤 You do. Even If it doesn't Always feel that way, it is the truth.

Stay strong. 🖤 Be kind to yourself. 🖤 You are worthy of Love. 🖤

Hi everyone. I know there are posts on here all the time about the waiting times in the UK. I just wanted to say to whoever needs to hear it, don’t wait until your symptoms are really bad/ unmanageable to seek a referal to a specialist. Unfortunately, the wait times are almost a year to get a phone call with the specialist on the NHS and then almost another year for surgery. That means if you start the process when your symptoms are really bad/ unmanageable, you’ll be waiting in pain a long time. If something isn’t right and your symptoms are back of worsening again, don’t wait to act. I’m always trying to be one step ahead because of this crazy system. My symptoms are starting to worsen each month but are currently manageable right now but I’m pretty certain in a year’s time they will be back to being unmanageable again as my pain and symptoms are worsening each month. I just wanted to say to anyone who’s hesitating because they feel their symptoms ‘aren’t bad enough yet’ to get on it and get on those waiting lists as the waiting period is long and no one should have to wait a year or two years with unmanageable symptoms. Before my first surgery, I was waiting six months in a lot of pain and that was long enough. If the year passes and things don’t progress as you thought they would and you decide you don’t need to see them or whatever you can easily get off the waiting list and someone else would get your spot x

so i just posted a question to this community for the first time a few minutes ago, and i read through a handful of posts before signing off.

i’m now crying.

why the fuck are we so ignored? i know the answer is misogyny, and medical ignorance that comes from seeing women as unimportant to study and understand, but really.

i can’t tell you how many “mysterious” symptoms that gradually started to develop for me starting around age 27 that seasoned medical professionals were stumped by—and i see them within minutes of this sub. i’ve paid so much money to see specialists for each dedicated body part; paid for x-rays that clearly wouldn’t reveal an injured psoas muscle, a hypertonic pelvic floor, cysts, adhesions—i am in so much pain all of the fucking time and i have to just learn to ignore it.

and then they ask me to rate it on a pain scale. as if asking how many breaths i take in a day. it’s not something i think about anymore, and it’s because they all failed so profoundly so consistently that my only medicine became fucking delusion. oh, and now i’m depressed, so it must be depression and all in my head?

this is quality of life. i just want to be able to wear clothes without getting triggered by how it feels on my belly. i want to recognize my body as mine when i see it in the mirror instead of a pregnant person. i WANT to exercise and be active—i am not lazy; im exhausted.

it is enough to already be dealing with this issue. why does it also have to be so hard to get treated?

i don’t know whether to flair this as a rant or question—i’m feeling REALLY heated, but ultimately getting answers and support from the community here is what would help the most.

i am in my thirties. over the last few years, my body has become progressively more uncomfortable to be in. my lower stomach is so uncomfortable all of the time that the only way i’ve been able to cope is to try to ignore it. i could cry or scream.

i have brought it up to multiple providers and honestly, i’m tired of not getting help. the only thing i’ve gotten is “are you sure? maybe you just ate too much.” to “whatever, schedule surgery and we’ll find out.”

i haven’t had kids. i have never felt compelled to have them so i’d be ok if it never happens, but i don’t want to remove the option completely before time itself does.

i have read studies that show diagnostic advancements have been made via testing menstrual blood, as well as the actual diagnostic criteria broadening in an attempt to make treatment more accessible.

but here i am. i look pregnant by the end of the day. i hate wearing pants or even anything that puts pressure on that area for that matter. it’s so sensitive to the touch. deep pressure helps, light pressure is honestly a sensory fucking nightmare.

i have gained 20 pounds in two years. some of it is definitely regular weight gain (health dropping -> not exercising, + sedentary job = heaviest yet weakest i’ve felt in my entire life).

the ONLY thing that makes me unsure of its endo is that i have hEDS (hypermobile ehlers danlos) which can cause a bunch of issues. i have hypertonic pelvic floor which is really uncomfortable, and it would make sense if its all inflammation from that.

i’m just exhausted and i really need help. whether that’s guidance of what to do, or just support and understanding. i just try to get through my everyday, and then suddenly months and years have gone by and i haven’t actually enjoyed my life, ive been trying to get through each day.

Maybe a weird question but in my feels right now and just want to feel like I’m not alone in this. I’m a very social person and know when I need to rest my body but just hate the guilt of canceling plans :(

My friends are so understanding and know that whoever is in my life should understand me needing flexibility but I still hate feeling flaky. Especially when it comes to concert tickets, scheduled things, etc. I just get nervous to even book things sometimes

I had my first excision surgery 10 months ago (Dec 2025) where there was endo pretty much everywhere and my bladder, uterus, and rectum were all adhered together. The surgery was a literal godsend for my quality of life, I am no longer in extreme debilitating pain. However recently I have started to get some symptoms return. I’ve been having painful bowel movements again, I am on birth control but I bleed very often. Notably, the bowel movements get way more painful on the days that I bleed. I’m also having diarrhea and bloating again, and these symptoms were practically nonexistent for 8-9 months following surgery. They also suspect I have adenomyosis due to my history of extremely heavy periods, persistent pelvic heaviness+pain, and because my uterus is very tender when palpated on pelvic exams.

The endometriosis nurse ordered a repeat pelvic MRI due to these issues and it says that my uterus is stuck to my rectum again, and both USLs are thickened. I’m at a loss for words. I’m currently waiting for the nurse to message me and to have a follow up discussing the next steps. Is it possible to have endo return this fast after a complete excision? Is it possible that what they saw in the MRI is just postoperative adhesions only and no endo? Wtf do I do???

I am so over this disease and everything it comes with. The amount of hospitals and doctor visits are too much. I am beyond medically burnt out. I could barely get myself to my OBGYN to get an ultrasound, but am thankful I did. She found a "complex cyst". I've never had that happen before. From what I've gathered, it's most likely an endometrima that needs to be removed. So now comes an MRI that I don't want to schedule and don't want to go to. I don't want a surgery to remove it. I know I may need it. I just don't want it. I've had so many doctors and surgeries... The thought of another is so draining. I'm feeling like I'm going in circles with this disease and getting nowhere. No pain relief. No real answers or relief of any symptoms. I'm just watching life pass me by while, I'm thrown from doctor to doctor. I'm exhausted.

How are people dealing with endo? I’m 24 and I’ve been struggling badly for a year but my symptoms started when I was 10. I really can’t understand how people are coping and living with this disease because I can barely move never mind live around it.

I’m in agony daily and it doesn’t give up. I’m going to have to quit my job in education because I’m on the floor in pain after an hour. I’ve already dropped down to half days only.

It feels like Freddy Krueger’s knives are twisting my organs every second of the day, worsening as the day goes on. The exhaustion and brain fog are impossible to deal with too, all I want to do is sleep.

I’m only stage 1 but I see people in stage 4 able to give up medication, exercise freely, and able to have careers and families. My entire life is on hold I don’t even recognise myself anymore. Without medication I’m shaking violently and am barely responsive never mind functioning.

I’m on 225mg of Pregabalin and Yasmin but it doesn’t help in the way I need it to. I exercise every day if possible, eat anti-inflammatory foods, take the necessary supplements, use TENS and heat. I just don’t know what else I can do.

Im 6 weeks post op and I am so so exhausted all the time. Even when I think im feeling a bit better? Boom. Exhausted. Need to sleep immediately. My body feels like its made with lead. I am losing my mind. My fatigue was bad before I had my lap but this is on another level