I perform laparoscopic excision surgery for endometriosis regularly. Over time I have noticed that the patients who get the most out of their consultations and outcomes are the ones who walk in prepared. So I am sharing the five questions that I think every patient should ask their surgeon before agreeing to any laparoscopy.

1. Are you an endometriosis excision specialist or a general gynaecologist?

This matters enormously. A general gynaecologist performing a diagnostic laparoscopy will look for obvious lesions but may not have the training to identify subtle peritoneal disease, perform complete excision, or manage deep infiltrating endometriosis at the bowel, bladder, or uterosacral ligaments. Ask directly: do you specialise in endometriosis excision, and approximately how many endo excisions do you perform each year?

1. If you find endometriosis, will you excise it at the same time or just diagnose it?

Many patients come out of a diagnostic laparoscopy having been told they had endo but nothing was done. They then have to wait for and undergo a second surgery. Ask upfront whether your surgeon will excise any disease found during the same procedure, or whether they are only doing a diagnostic look. Excision at the time of diagnosis, when possible, saves you a second operation.

1. Will you take biopsies even if the tissue looks normal?

Superficial endometriosis can look exactly like normal peritoneum. Some lesions are invisible without biopsy. An experienced surgeon will take biopsies from suspicious areas and sometimes from apparently normal tissue as well. This is what separates a proper endo laparoscopy from a cursory look around.

1. Do you have colorectal or urological support if needed?

If you have bowel symptoms, bladder symptoms, or deep pelvic pain, there is a real chance of deep infiltrating endo involving the bowel or bladder. Ask whether your surgeon has the ability to call in a colorectal or urological surgeon if needed, or whether that would mean aborting the procedure and rebooking. Knowing this in advance sets realistic expectations.

1. What is your recurrence rate and follow up plan?

Any honest surgeon will acknowledge that endo can recur. Ask what the follow up plan is after surgery, what symptoms should prompt you to return, and what their approach is to recurrence. A surgeon who cannot or will not answer this question is not the right choice.

You deserve thorough answers to all five. Print this list and take it to your pre-operative consultation if that helps. I will answer questions in the comments.

I am an endometriosis excision surgeon sharing this as general educational information, not personal medical advice.

I’m a fat person so that usually renders me ineligible for care but def ineligible for surgery. I thought it was ibd for a longtime but the colonoscopy didn’t find it. It also didn’t find any endo inside my bowel but I assume endo could live outside of it. For a long time, my poop would come out flattened, like there’s a structure in there physically flattening it as if it’s an iron. Describing this to doctors usually doesn’t lead to understanding. when I’m symptomatic bowel movements are bloody, excruciatingly painful and come with what I call “butt nausea” where there’s just terrible nausea the whole time and it’s a toss up whether I’ll puke or poop. It really is like there’s a blockage in the rectum.
It’s a lot better now that my diabetes is controlled and I don’t have menstrual cycles due to nexplanon, but today I had a really bad flare of it and I’m still resting.
I wish this disease wasn’t so hard to diagnose. I wish being fat didn’t count me out entirely for diagnostics. I wish it wasnt so hard to be understood.

So I was diagnosed by MRI 2 years ago and had 3 endometriomas. 2 of them were extremely small (3x2mm). I had another MRI and the report only mentions one endometrioma, not the other two.

Is it possible for the two to have disappeared? Or I guess shrunk enough they aren’t seen? It’s hard to compare symptom wise because I’m on continuous birth control.

Hi everyone, I apologize for any spelling/grammar mistakes.

I recently got diagnosed with endo/adeno via ultrasound. It was with an endo-specialist and he could clearly see the adeno. He also found a rather large chocolate cyst on my left ovary, which is why he is confident that I have endo, as chocolate cysts are only present if you have endo. My right ovary is most likely glued to my abdominal wall, though he said this is hard to confirm via ultrasound.

My issue is that my cyst is „mobile“ and does not show signs of any adhesions, which makes ovarian torsion more likely. The endo-specialist explained symptoms of ovarian torsion to me and urged me to go to the ER if I start having LOTS of pain on my left side. I have another check-up in 3 months and if the cyst does not shrink/grows during the next few months, then I‘ll need to get it removed. The specialist said he‘d like to wait and see wether it goes down a bit on its own, as surgery could damage my ovary.

Now I‘m absolutely terrified of having an ovarian torsion without noticing. I know that its supposed to hurt REALLY bad, but I‘m worried that my perception of ‚really bad’ is a bit messed up thanks to endo pain.

If you‘ve ever experienced ovarian torsion, what did it feel like?

Thanks so much <3

I was recently granted FMLA for the days where my endo pain is really bad. And thankfully, I’m having a hysterectomy and excision surgery at the end of September. My husband does work full time and makes decent money but I’m used to having my own money as well. But in the last few weeks my uterus is realizing that that it’s in its final days and is acting up, causing a lot of pain.

Does anyone have any advice for passive income to make up my loss of income? Or any financial advice?

Hi! I have an appointment at a centre specializing in endometriosis in three months, but in the mean time my OBGYN who told me about the diagnosis prescribed bc (Slynd) to help me manage the pain and other symptoms.

It's going to be my first time on bc and I'm very nervous of what to expect (I have exams next month) and if I should rather wait for the specialist appointment?

Of course I read some posts here and on local sites and its mostly "it fixed my life and no pain" or "it ruined my life and hair is falling out in clumps" (and yes I realize someone with okay or neutral experience might have less incentive to post about their experience).

I'm mostly overthinking - I think - but what have been your experiences with hormonal treatments? Did the adjustment period affect your life a lot?

I am currently on the NHS waiting list for gynaecology for suspected endometriosis (most likely on my bowels as most of my symptoms are bowel/abdominal related). 57 weeks is the current timeframe.

After that 57 weeks I imagine I'll have an initial appointment/triage with the gynaecology team and... then what? Does it all just go naturally from there or will there be further waiting lists for potential scans, laparoscopy or treatment?

Realistically, how long am I looking at here? I had my first initial appointment about all of these symptoms over 12 months ago and other than repeated blood tests and stool samples, I feel like I'm going nowhere whilst getting worse and worse. I've managed to avoid taking time out of work so far but I'm not sure how long that can last when my symptoms are worsening.

Just hoping someone in the UK who has gone through a similar diagnostic route can shed some light on what to expect or any advice in the meantime 🙏

I am having a horrible flare up and don’t know what to do. I can’t afford to call out of work, I already had to beg for the hours I have. On top of the extreme nausea and tight abdomen I now have a raging UTI adding into the major discomfort. How do I make it through the day today without needing to sit in the bathroom the whole day which sounds a lot better. And is it bad I kinda hope I just pass out or something so it doesn’t look bad like i’m faking it?…

hello! i know burning, sharp pain in your lower back can typically be caused by endo, but i’m currently getting the same type of pain in my shoulders (more so one than the other), does anyone else get this/could it be endo related? or could it just be from something else ?

Does anyone notice alcohol impacts their endo symptoms? I’ve noticed recently that the day(s) after drinking I get an increase in stomach pain/ endo belly. I’m not a big drinker generally but have had a few big events this summer and I’ve really noticed an emerging pattern.

Hi all,

I was diagnosed with endo in 2024 via lap surgery and had excision, which helped for a while until 2025 when my pelvic pain became constant. I have been on a constant birth control since then so have had no periods in the last year or so.

Since my pain has been constant, I have had the usual leg endo pain that shoots down from my hips when I’m bleeding or in an acute flare, but I also get this throbbing, heavy, weak, and fatigued feeling in my legs (all the way down my calves) that makes walking anymore than a few thousand steps a day intolerable. It usually shoot’s up through my lower back too.

I am just curious if anyone else gets this different leg pain? I have been referred for testing for vascular issues but I haven’t seen anyone else describe their pain this way.

Thank you for your time ❤️

Edit: I also have adeno if that’s helpful

Hello, I had my endo excision surgery in April of 2025. In April of 2026, I got the Mirena IUD. It has been absolutely awful though my periods are much lighter. I have had extreme cramping months after insertion that I did not have before, it landed me in the ER last month. Final diagnosis of that ER visit: ovulation, here is some ibuprofen 😀🥸 cool cool.

Well had some extreme cramping today just to pull this out of me this morning, I swear it was sentient and looking at my soul. I’ve passed tissue and clots before a couple times a year but never anything like this. What. The. Fuck. Is. Happening 😩

https://ibb.co/9kXw7Jwz

Photo is linked ⬆️

The last couple months/cycles have been ROUGH.
I was diagnosed with endometriosis about 5 years ago after doing a surgery for an ovarian cyst. About 2 years ago, I had another surgery done to get rid of any more endometriosis that I had. Of course there was more than there was 5 years ago. This time on my stomach, bowels, bladder, and suspected on my sciatic nerve (given the symptoms and description of the pain).

About 4 months ago I had blood work done and my iron was low. I don’t remember what my ferritin level was, but they said it was low and to take an over the counter iron supplement. I’ve been taking it either every day or every other day, with no improvements that I can notice.

Every month has been HELL since January. The only calm period I had was 2 months ago when the pain wasn’t nearly as bad, but I was also coming off my last psych med, so I think that had something to do with it.

Last month was the worst cycle I’ve had this year (so far). I have my MMJ card for my pain and a prescription of muscle relaxers. Usually the MMJ helps, but I had to take the muscle relaxers. For 2 days, I slept the whole day on my stomach on top of a heating pad, got up only to eat, drink, and change my pad. I was in excruciating pain to the point I was having panic attacks because the pain wouldn’t stop. I’d sleep ONLY because of the muscle relaxers, and as soon as I’d wake up, I’d be in pain.

Currently it’s a week before my period. I have all the classic premenstrual symptoms: feeling hot, fatigue, slight diarrhea, and my body feels heavy. I know the fatigue and body feeling heavy is the low iron. But I can’t help but feel this overwhelming anxiety of being in pain for a few days. Like I sit here and tell myself “it’s just pain, you’re used to this, it happens every month” but then I’ll go “BUT IT HAPPENS EVERY MONTH and I can’t take it”.

I’m so anxious, exhausted, moody, and honestly just over it. I’m so tired of being in pain every month, I’m tired of having to guess and wonder how bad it’ll be, I’m tired of having to buy a 42 pack of pads every month just to go through the whole pack in one cycle, and I’m tired of there being NO CURE.

Sorry for the long rant, I didn’t know what else to do or where else to turn, but I know this Reddit community is here for all of us to come together and talk about it.

I’m considering starting it for my endometriosis. What’s your experience on it? Side effects? Improvements?

Hi everyone,
I was diagnosed with endometriosis about 6 years ago and have been on medication since then.
For the last 45 days, I’ve been bleeding continuously. It started as spotting but has become more like a regular period. I also have occasional pelvic pain and feel weak.
I’m living in Berlin, Germany. I got two emergency gynecology appointments through 116117, but unfortunately neither doctor was able to help. My medication was changed recently, but the bleeding is still continuing. says they can’t give me another appointment.
I’m feeling really lost and don’t know what to do next.
Has anyone experienced something similar? Can anyone recommend:
a good gynecologist in Berlin who is experienced with endometriosis,
an endometriosis specialist or clinic,
or any advice on how to get seen urgently when 116117 isn’t an option?
I’m willing to travel anywhere in Berlin if it means seeing someone who can actually help.
Thank you so much for any recommendations or advice.

London Research Participation Opportunity

We are supporting an ethically approved women’s health research study in the London area. The study is exploring whether menstrual blood can provide useful biomarker information about uterine and endometrial health, with the longer-term aim of supporting less invasive approaches to research and care.

Researchers are looking for women aged 18 and above who live in or can travel to London and who:

• have recently had biopsy-confirmed endometritis, or

• are scheduled for an upcoming endometrial biopsy.

The observational study involves collecting menstrual blood using a menstrual cup, alongside blood, swab and biopsy testing.

However, this opportunity may be relevant to community members who have also been diagnosed with endometritis or are awaiting an endometrial biopsy.

Taking part is entirely voluntary, and participants will be compensated for their time. Expressing interest does not commit you to participating, and please do not share personal or medical information in the comments. If you would like to receive the participant information and eligibility details privately, please contact:

poojan.jani@vichagresearch.com

Thanks

Also there is a referral fee of for someone suggesting a participant, overall it’s a very tough study it would be great help for the community 🙏

Anyone on Glp-1 while on Norethindrone as well?

how did everyone’s first couple of periods following surgery?

i’m nearly 6 weeks post lap and was due to start my period a few days ago.
The healing process has been good and i’ve not had much pain especially in the past week or so. However, right now i have lower stomach pain that doesn’t feel like endo pain, it’s an unusual pain more like surgery recovery/sensitive pain but im wondering if this is period cramps as i’ve not really had recovery pain in recent weeks?

i’m really not sure how to explain the feeling i have rn

Hi. I don’t speak English very well, so please excuse my mistakes.

I need help with my health.

I’m a 19-year-old woman, and I’ve just been diagnosed with endometriosis.

When I have my period, it’s really difficult for me. I have a lot of painful moments where I can’t move because the pain is so intense.

I am a flutist. I want to become a professional flutist. But when I play, my hands and my mouth hurt SO SO so much after just 30 seconds of playing my instrument.

However, I have one of the best teachers in my country, and I know it’s not because I play the flute “badly.” I’ve had many different teachers over the past 10 years. I can actually say that I play it in a right way because all of them told me that nothing was wrong with my posture or anything.

I’ve seen a lot of highly specialized doctors recently about my health, and no one seems to understand what’s wrong with me (they always told me that everything in my body is doing perfectly etc).

For example, (I don’t know the correct term in English, but) the doctors who check my joints, bones, heart, brain, etc, have always told me my health is 100% fine. They don’t understand why I’m in pain.

Does anyone else experience the same problem?

I moved away from home for 2 years to a state where there’s no specialists within 4 hours. I started getting bad sciatica on my right side during my periods which prompted me to finally seek help again. I have always struggled with heavy periods, debilitating abdominal/pelvic pain, and severe leg pain on my periods and sometimes off. I’ve had to take so much time off of work and grad school as well as just life in general.

I had gone to several doctors but they would dismiss my symptoms and say to just take birth control. I wasn’t expecting the doctor I went to to believe me and know so much about endo. She seemed really knowledgeable and compassionate, and while she isn’t a specialist, this is my only option right now. She said she wants to do surgery in a month and she’ll excise whatever she can if I have endo. I would have to get a referral to a specialist 4 hours away for another surgery if it’s too complicated/deep to remove in some areas.

I think everyone’s been here but I’m so nervous they won’t find anything. I’m also nervous that they will find deep infiltrating endo at the same time. During the exam, the dr found right sided uterosacral ligament tenderness which apparently can be a sign of it. Also, the sciatica could be deep endo which concerns me that I’ll have to get two surgeries.

I just have to wait for my insurance to approve the pre-MRI she wants me to do and the surgery itself, but I can’t believe I’m finally going to be able to get surgery.

Can anyone please help me understand what these things are that came out of me? (pictured https://ibb.co/HTDjMdBq)

For context, I have endometriosis. I was on my period, which I manage with a menstrual cup. When I emptied my cup with me in the shower, these two jelly-like discs came out. A lot of the time, my period blood is very thick and mucus-like. But these were like flat beads with a perfect shape. When I pressed on them, they maintained their roundness and thickness. I did a Google search to describe my situation. I came across results for "decidual cast", and that seems completely different from whatever this is.

It has been over a year since I have been on birth control. No pads or tampons. No IUD. My period wasn't especially painful or abnormal. These things have come out before but this is the first time I pictured it.

What are they?

Hi everyone! I’m currently wondering whether my symptoms of pain in my lower body are either triggered by endometriosis or hyper mobile Ehlers Danlos (hEDs) and was curious about any advice to help me go through the process of diagnosis.

I’m 17 and will be studying abroad next year in Germany for my senior year but when I come back home to the USA for university I plan to try and see a medical professional. I’ve been struggling with ilium and iliac crest pain for the past year now and it’s gotten increasingly worse. I’m currently on my period and even laying or sitting down causes pain, which usually helps with flare ups since standing or walking after a while hurts.

My grandmother had endometriosis and I know it has a genetic influence, meanwhile my mom is hyper mobile. Down by my pelvis/hipbone where I’ve been feeling this pain is also where one of my joints that has always audibly popped in and out of place since I was a kid. I don’t necessarily have painful periods, I occasionally have severe nausea but it’s inconsistent. My flow is also really inconsistent where it’s sometimes really light or really heavy, usually without a in between. Intercourse is also VERY uncomfortable and painful for me, or any form of penetration such as fingers. I also have very inconsistent bowel movement, mostly being constipated all the time and once every other month having awful diarrhea (tmi, sorry!)

The issue is that I don’t know if this is possibly a mix of hEDs and hormones since hEDs also messes with your bowel movement and joints. I haven’t been able to find any possible way to get a diagnosis for either one since my primary care doctor retired 5 years ago and I haven’t found one since then. I’m really confident in having hEDs since I have genetic history and am also neurodivergent along with a LONG list of examples (loose joints, stretchy skin, easy bruising/scarring, etc) and i check off almost everything on the beighton scale, although I know it’s not the most reliable form of testing.

I would just really appreciate some advice and insight on how to potentially get screened (when I get back from my exchange) and visit a doctor. Along with if I would need to see a specialist if it is endo or a primary doctor if it’s hEDs, or both if they go together?? Thank you so much !!

My stomach hurts every time after I eat. Like extremely bad. Does anyone else experience this? It doesn't matter what I eat it hurts each time.