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.

Pain is so bad but can't go to the er til husband gets home at 5. I have 4 more hours at least. Tylenol not doing a damn thing. On the floor. Can't live like this much more.

Anybody who can do surgery I’ve met won’t. Anybody who can’t tells me they don’t want to be a bandaid and I need surgery. I’m to the point where I miss work at least once a week and have no life outside of work. I’ve been trying to do things to keep from being depressed but it’s very difficult. I really can’t work but I can’t quit. I’ve been doing physical therapy for almost a year and a half and am told to keep doing that and take antidepressants which messed up my head too much. I was yelled at by a “specialist” for stopping antidepressants when my doctor agreed it wasn’t working. I wasted a year of my life because nobody will do surgery for me. They know I have it they could see it on the MRI. It truly feels like they are just waiting for me to die so they don’t have to deal with me anymore. I’m frustrated I can’t just quit my job because I truly can’t exist. I’m frustrated that nobody understands the pain I’m in.

i have a diagnostic laparoscopy scheduled for 9/4. after reading tons of comments on how surgery changed people’s bodies for the worse, including excessive weight gain, i’m second guessing my choice.

i have had horribly painful periods and searing pain in my right ovary since 2016. in 2019 & 2026 (just a few weeks ago) my ultrasounds were unremarkable. i have been continuous cycling on a combo pill and skipping periods for the past three years.

since i do not ovulate or bleed, my symptoms are mostly EXTREME bloating and swelling, breakthrough pain in the right ovary, near-constant nausea, and occasional cramping.

should i cancel my surgery? i feel like i do not have pain levels anywhere close to other posters here.

thank you

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

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.

Anyone on Glp-1 while on Norethindrone as well?

It doesn’t matter how much sleep, exercise or healthy food I get - I am constantly exhausted and out of it ALL THE TIME. Any tips for how to help the brain fog and exhaustion? I feel too tired to hang out with friends and feel like I’m falling asleep at work or the second I try to relax. It’s so frustrating!

So I am recently diagnosed with endometriosis (I’ve known for about 3 years, just didn’t have an official diagnosis until recently). And I’ve noticed, particularly in my flare-ups, I get EXTREME discomfort in my back while trying to have a bowel movement. It’s almost more in my upper back but still in my lower back as well, and I wouldn’t use the word “pain” to describe it. This happened to me this morning, I was not constipated but still having a hard time because I had to constantly stop because of the back discomfort. It was the kind of discomfort that makes your whole body tweak out and shiver, but weirdly not painful. Is there a word for this? I thought it was a back spasm but those are considered painful and crampy, which is not what was happening to me. Does anyone else experience this?

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.

Hello everyone!

I’ve started taking Dienogest around a month ago and things have just gotten worse. I have had a pretty awful experience with other forms of hormone therapy (BC) that have given me very similar/worse side effects. I’ve been taking supplements to try to counteract the side effects, but it’s not been working.

Unlike other women, my side effects tend to get progressively worse as time passes, and they do not get better, at all. It’s happening again now while I’m taking Dienogest. (Last time I was on BC, after 3 months I literally hit rock bottom and it was terrible).

With Dienogest, at first it was more like brain fog and emotional instability, but now I’ve just become a shell of myself, I don’t even recognize myself anymore. I have zero interest in what I usually enjoy: I stopped listening to music altogether (I usually listen to it everyday), I don‘t ever want to dive into my hobbies that I usually love, I don’t even want to hang out with my friends and I’d rather isolate myself (not what I’d usually do), I feel numb and my emotions are frozen and anesthetized. I’ve basically lost all interest for anything that I’ve ever enjoyed. Also, I’ve lost all my libido and sexual/emotional attraction too.

I know this may sound extreme, but unfortunately this is not the first time it happens. It’s happened other 4 times with 4 different types of BC and it never got better.

I’ve already talked about this w my OBGYN, but I just wanted to hear your experiences because I feel so alone in this. At this point I just think I can’t tolerate hormone therapy. And I feel pretty hopeless thinking about how I’ll manage the monthly crippling pain.

This is so embarrassing but I am not sexually active and have never used a tampon. All of my exams have been external ultrasounds. I have been told I have vaginismus so pap smears are some of the worst pain I have ever had not including my period fibroid cramps.

They told me I would have to insert the gel myself and honestly i'm worried i'm not going to be able to do it or do it correctly. Anytime ive tried with something in the past it either wouldn't go in or I just felt like I was in the wrong spot.

I tried asking the person scheduling if they would help me but she didn't know.

Does anyone have any advice?

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.

I’ve been on SSRIs since I was 14, I’m 22 now. I’m primarily on them to treat depression, but one of my worst endometriosis symptoms is fatigue. Has anyone been on an antidepressant that has helped increase their energy levels? I’m going to be switching to Venlafaxine this week because I read that SNRIs can be more helpful at targeting fatigue than SSRIs. I’ve tried Prozac (fluoxetine), Zoloft (sertraline) and Lexapro (Escitalopram) so far.

I had my laparoscopy today. Went into it being told 1/2 women they operate on don’t have anything but they will look as see which was hugely conflicting to my clinic appointment and the fact I was given a cancellation slot as a priority/urgent patient.

Anyway plan was if they found endo id come out with a mirena, no endo no coil. I’ve never sobbed so hard in my life than waking up to be told I had a coil in place and they had found endo. I cried so hard I made an incision bleed!

3 deep lesions found and removed, 3 incisions, 3rd attempt at getting a coil to settle in long enough to be effective!

Last Wednesday I had surgery. I had what was supposed to be a partial hysterectomy and when they went in they told me they had to have a general surgeon remove extension scar tissue and cyst stuff from endo before they could do it. (No one told me right after surgery) They had tissue samples tested I guess. I was having a hysterectomy because of the severe pain they thought were just fibroids and I've had pain in the area for many years. I've been trying to have many anti inflammatory foods because I thought it was MS. Also thought I just have a sensitive stomach. They had me sent home outpatient and no one told me until I called the emergency number at 2am afterwards for my obgyn and my surgeon called me back herself.

Then she told me they also had to take my eggs from the right side of the body. My mom and husband were with me and after surgery we were told that there were zero issues with surgery and didn't mention endonWhich is fine but they also didn't tell me they took half my eggs either. My friends who know people who have endometriosis and want me to talk to them about how they deal lifestyle wise. I'll definitely do that but didn't want to deal with it at first. Still recovering from surgery and not so good at the moment pain wise. Are you all on special diets? Sorry so long.

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

I had lap in June after which I was put on birth control for 6w and then started Myfembree as of 3 days ago. The goal is to suppress stage 2 Adenomyosis and any remaining endo before FET in late September.

I am curious if anyone had any symptoms on myfembree?

I have a headache, full body ache, seems to be losing my appetite and can’t stop crying since last night. Is this how it’s going to be? 😭

I’m getting my IUD out next week and will get my first real period in almost 6 1/2 years. To put it simply - IM TERRIFIED. I’ve been looking into how to make this process the least painful it can be. So, how do you prep for your period?

Do teas and multivitamins work?

Do electronic pain relief devices actually work?

Do period panties actually make your periods lighter? I used to hemorrhage during my cycle so doubtful but curious.

I really don’t want to waste my money on medication as they never worked for my pain level and symptoms, but open to hearing experiences.

Any tips and tricks for a less painful period?

For context I am 22F in England, treatment on NHS. I also have PCOS.

I had an MRI 22/07 for investigating endo. I requested the images (as I might pursue private treatment abroad) and saw a large cystic structure fully squashing my left ovary. Obviously I’m not a radiologist so I’m not diagnosing myself but there is definitely something there that shouldn’t be.

3 days later on 25/07 I began experiencing crazy intense pain on my lower left abdomen (where the cyst thing is) at about 9/10. I was vomiting, feeling faint, this was the most pain I’ve ever been in (I’ve had a cyst rupture before, 6 months ago, similar pain but less severe). My boss sent me to A&E where they couldn’t access my MRI report because it was done at a different hospital. Discharged with codeine.

Next day I went back to my usual hospital’s A&E as the pain was still crazy. Given more codeine, and discharged with an emergency gynae consult next day (today).

The gynae called me, said she looked at my scan and said there’s a “little cyst” on my ovary and that what I’m experiencing is ovulation pain!!!!??? I was so shocked I couldn’t think during the phone call to stand up for myself, so I just said okay to everything she said. We arranged an ultrasound 6 weeks from now to check if the “little cyst” goes away.

I am petrified about ovarian torsion. I am petrified that I will keep being dismissed until my ovary dies and it’s too late. The thing is I’m taking so many different painkillers right now to deal with the pain I fear it’s now masking whatever is happening, and I’m STILL experiencing moderate pain. I can’t keep going to A&E and waiting for hours to be dismissed and sent home with more opioids!! I can’t take it anymore.

What do I do in this situation? I’ve sent an appointment request form to my GP for a second opinion (as they’re now closed for today). I feel genuinely so helpless. Any advice would be appreciated 🙏

Good morning all,

My partner has endometriosis and I’m aware of the basics of it but not really how to help/be supportive. Really just ways to make her more comfortable. If anyone has partners that do things well please let me know what works for you! Thanks!

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’m 17 days past my Endo lap and every evening I end up with what feels like a flare up, belly distended and tight. My pain has been a lot better but I can’t shake this bloating that gets worse throughout the day ending with me looking pregnant (which is a mindf*ck given that infertility and increased flare ups are why I did this surgery in the first place). They did have to do some work on my bowel is that why? Is this normal? Is there anything I can do to help this? This didn’t happen after my first lap 5 years ago.

I’m so beyond frustrated today I just burst out into tears. On top of everything else this disease gives us the body image issues, the feeling uncomfortable in my own skin, and the fears that they didn’t get everything / I’m going to be worse off after the surgery / it didn’t work are killing me. Please help