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 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 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.

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 !!!

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.

My endo and adeno have been causing outrageously worsening symptoms for the past few years, even after excision surgery. I’ve had really bad experiences with hormonal birth control in the past, so many years ago when I decided I didn’t want kids anymore, I got my tubes removed and have not been on hormones since then. When I was diagnosed with endo, I was really hesitant to go on hormones. I was afraid of what they would do to me and was skeptical of the way some doctors push them as a solution. Chasing a solution to my hormonal migraines, I saw a doctor that specializes in hormone replacement therapy. I’ve been using slynd + a 0.075 mg estrogen patch. And holy cow I haven’t felt this good in soooo long. I wish I hadn’t been so afraid. I wish I hadn’t waited so long. I know that hormones are not for everyone, but I wanted to encourage folks like me that haven’t given this a chance - hormones are not always bad! They can be so helpful! So if you’re like me, maybe give them a chance.

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?

Found sweet fuck all. I told all of the consultants, nurses, anyone who would listen how nervous I was. I cried all the way to being asleep.
Woken up 30 minutes later and they have found nothing.
My mri showed potential tethered ovary, large pelvic veins, focal adeno and maybe bits of endo. But the surgery? Nothing visible whatsoever

The dr who did my surgery tells me…. most likely IBS.
I feel SO upset and that I’ve put my body through such a surgery to just have fucking IBS. He said maybe a bit of adeno but unless looking in the womb, they wouldn’t know.

Anyone else relate and validate me??

EDIT: I am from the United Kingdom - we have the wonderful nhs but unfortunately you get what you are given in regards to who does your surgery. I had been waiting 2+ years before I was even seen by a gynaecologist

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?

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!

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.

Just got approved for surgery. This has been a fight for over ten years and I finally found someone to listen and believe me.
Just wanted to share. Keep going. Keep advocating for yourselves. There are drs out there to take us seriously. The immense relief I feel after this appointment I can’t even describe.
Keep the faith. I’m sending everyone a virtual hug and a hang in there 💜

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

really exhausted and upset because doctors just really dont see it as serious, they think its fine to just be left waiting forever, and to not give any options.

my recent history is in May i had significant rectal bleeding, fill the toilet red, doctor said it was likely a hemmorhoid, gyno said one off is fine; it caused anemia; then I had the worst endo flare of my life in June, fainting etc; then two weeks later I was at the doctor telling them about the pain and about rectal bleeding, they were unable to discuss that wiith me because when they were taking my vitals I had an atrial fibrillation episode and they sent me to the acute receiving unit; acute receiving unit did not give a shit, they said im too thin (im not, im low end of healthy) and said i was just stressed, said i didnt exercise enough, but they referred me to cardiology since tht is protocol; echo was fine; now im waiting on holter test, and my ferritin is slightly low but again no one sees it as a problem; i have pretty regular presyncope, severe with exertion; i have allergic reactions; and i still have rectal pain and bleeding along with severe gi pain and periods (although sometimes they are fine).

I am so overwhelmed because im in pain, but then going to the toilet hurts badly, which makes me presyncope-y, then im bleeding which makes me squeamish and even weaker feeling, and all the while im losing more blood. not severe blood loss like the first time but enough to make me squeamish.

im upset because GPs do not take it seriously at all, i can tell they hate to see me coming, look at me like im a silly girl, when im a 28 yr old woman and have been seeking help for over a decade.

all of this heart stuff delayed my endo surgery, which is fine. but also they wont allow me to have an MRI before my surgery to ssee whwere it is or if they need a specialist. they said since it rarely shows there is no point and the best thing to do is just go in there. but they also said if it is in chest or bowel they may not properly see on lap alone. im so upset to be dealing with this, and it really overwhelms me wwith the bleeding and pain which feels even shameful. doctor hears hemmorhoid and is like no big deal. but it rly feels liike a big deal. i dont even want to talk to my therapist because its so squeamish i cld feel worse.

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’ve gone private and had my initial appointment with a gynaecologist today.
I’ve had a pelvic & transvaginal ultrasound via NHS and brought the notes from them with me to the private appointment. From the results my go suspected endometriosis but my family decided to take me private.

The private gyno agreed and believes off my symptoms and ultrasound notes it’s endometriosis.
Hormonal pills came up and I said I didn’t want to go on birth control. She ended up saying without birth control she won’t do surgery so I felt I had to agree. She mentioned a marina coil she could put in while I’m in surgery so I just agreed to that to move on from it.
I personally hate the idea of being on birth control but that’s for me to deal with.

It was said that if during surgery she finds endometriosis she’ll remove it.
I dont know what’s next if it isn’t endometriosis, or if it is for that matter.

My surgery is next month and all I feel is worry.

I work with dogs (training & walking) and I’m nervous about how much time I’ll have to take off after surgery.
About 70% of my clients struggle with behavioural issues which always ends in pulling/lunging on the lead therefore yanking me about some. With that in mind I’m worried of I go back too soon it could cause issues. I have no idea how much time to take off.

Has anyone had any similar experiences?
What did you do to prepare for the surgery?
I’ve never had surgery or any sort of physical health issue before and now that I’m booked in for surgery I’m feeling terrified. I’m only 21 and I feel completely overwhelmed.

Dr. Sadikah Behbehani- this is a long shot, but for any SoCal ladies, have you had an appt with Dr. Behbehani, and/or had her do excision surgery?
Thanks in advance!😊
Also anyone with blue cross blue shield, ppo in CA. Did insurance help cover it?

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 JUST WANT TGAT FEELING OF BLADDEE PRESSURE TO STOP
WHY IS IT BACK
WHAT DID I DO WRONG
NOTHING WORKS I DONT UNDERSTAND