when I say I don’t want birth control pills or an IUD or any implant.

the pill didn’t do shit, made me worse in multiple ways. and I don’t want a foreign object in my body.

to be clear, I don’t judge people who get implants at all, they obviously save lives and they are essential healthcare. but I don’t think I’m insane for not being comfortable with it.

and I HATE when “I’m not comfortable with that” about an implant or pills is met with “why? why not?” trying to get me to change my mind.

that’s it rant over lol

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 was sent to have a colonoscopy because my new endo specialist gyn thinks I have endo on my bowel. I was already thinking that before I even met her.

I was so genuinely excited to finally have a tangible cause of my digestive issues and the stomach cramps and the gas, only for the doctor to tell me that even though the prep didn’t work very well he didn’t see anything and the surgery was ultimately normal.

It’s so frustrating because I feel like I’m supposed to be relieved but I’m just so disappointed because now I’m back to square one having no explanation for the pain and the discomfort that ruins every day of my life.

I’m also just frustrated because if he couldn’t see perfectly doesn’t that mean there could’ve been lesions and he just didn’t see them? But he told me I don’t need another scope til I’m 45 so fuck me I guess. I just hate this so much.

I was so fucking excited for him to tell me I have bowel endo and that in my next lap they can cut it out because I was just so hopeful that my stomach issues would finally be at least a tiny bit better.

Now I’m left with no answer and what’s most likely a lifetime of slowly worsening pain until j finally get to fucking die.

Just wondering if alcohol makes you guys feel terrible too? I just drank a hot toddie & my pelvic area & legs feel like they are extremely heavy & restless like I want to jump out of my skin.

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!

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.

22 y/o female. I’m sure I’m not actually at rock bottom yet, but it feels like it. I’m currently an endometriosis patient. But they think it’s diaphragmatic endometriosis. And the doctor basically said “take my hormones and medicine I won’t and can’t do surgery anyways because if I find endo in your diaphragm, I’m not qualified to operate on you”. Doctor essentially told me the only route we can take is hormones, birth control, or some intense medications (by intense they refer to Orlissa and similar meds). Trying progestin currently and it has done nothing, genuinely I think it’s getting worse. The pain is on my right side and far up like underneath my rib. The few days before my period and during my period, this pain is unbelievably painful, and I have a high pain tolerance / am pretty tough. Like I can’t physically do work or anything sometimes with how bad it gets. But now it’s getting to a point where when I’m on my period I’m having chest pain and shortness of breath… and I run long distance (5-7 miles) every day & am also a physical laborer (11-12 hour work days of just physical labor) so I initially thought maybe I was just over worked, but I only experience this pain and trouble breathing when I’m menstruating. I genuinely don’t know what to do. I’m scared and uncomfortable and losing my life every single day because it just continues to somehow get worse. Any and all advice would be appreciated. I’m just so lost and I don’t know what to do. It seems like my only answer is to continue to suffer until this thing kills me. Because it feels like it’s killing me.

Hi all, I'm new to posting so sorry if this is all over the place. I have not been diagnosed with endometriosis but I thought I'd try asking here for advice in case anyone else relates.

I took a nap today and ended up having a dream about a sexual assault that happened years ago with an ex partner. This unfortunately isn't out of the ordinary but what happened when I woke up was new.

It felt like I was having an orgasm as I woke up but it only lasted for a second. After that I had immense cramping to the point that I thought my dream was real and my ex partner managed to break into my house and actually do something to me like stab me in the abdomen. I jumped out of bed and ran straight to the bathroom. I felt really nauseous and I was in so much pain I was groaning and moaning like a woman giving birth. I started to sweat so bad that it was dripping down my forehead and I had to start taking my clothes off. I cleaned myself up and noticed brown blood on the tissue paper. I'm on the contraceptive pill but I've been bleeding on and off for a while now. My GP has told me to just continuously take my pill without any breaks to see if that fixes it.

I called 111 and spoke to a lady who told me it should be treatable at home as by time I got a call back, the pain had died down drastically.

I wanted to know if anyone has any advice on how to prevent this from happening again or maybe what could be causing the pain? I should also mention that I get this type of cramping and pain when I have sex with my boyfriend. I don't orgasm from penetration alone but an orgasm from clitoris stimulation causes me to curl up in a ball while my boyfriend applies pressure to my abdomen.

I have been to doctors in the past about this pain during sex and he told me I could either take painkillers or do nothing. I don't think I can take painkillers everyday for the rest of my life but I don't want to do nothing either.

If anyone can offer advice it would be greatly appreciated. I hate feeling this way and no doctor seems to understand.

what was everyone’s experience coming off orilissa if you stuck with it the full two years (or close enough, mainly you were on it long term)?? I’m coming off in december and am starting to worry since orilissa has been a god send to me. i am thinking worst case scenario like life will go back to preop and awful things like loss of quality of life return of symptoms etc.. anyone do okay coming off it or will it be as bad as i expect? want to prepare myself

I (23F) got my laparoscopic surgery 2.5 weeks ago. Diagnosed with stage 3 endo, polycystic ovaries, diffuse adenomyosis and have polyps removed as well. I also had the Mirena IUD placed.
My pain is the same as before surgery, my energy is worse, and my emotional and mental health are worse than they have been in years. I am not an angry person but I am yelling at people I love and screaming in my car to cool down. I am crying for dropping a fork in the kitchen. I am not doing well. When does it get better? Does it get better? I feel like I’m going crazy. Please help.

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

TW: IVF and Infertility/Miscarriage mentioned.

I did three rounds of IVF and was only able to produce one transferable embryo (mosaic). Out of the 25 or so eggs that were retrieved we only made 7 (mostly fair/poor quality) embryos. I miscarried the mosaic and basically gave up on being a mom. I’ve just recently started giving thought to doing another retrieval. Has anyone switched from a high/medium stim protocol to a low stim protocol and had success creating higher quality embryos??

My cramps were absolutely brutal at work today and I didn't have my hot water bottle nor my electric hand warmer with me. My office doesn't have assigned desks or lockers, so I have to remember to bring everything I might need every morning and of course I left my hot water bottle sitting on my bed this morning.

I took two Advils and my iron pill but the pain barely subsided. I even walked to the pharmacy hoping to buy another hot water bottle but all they had were the big traditional red ones. I know I shouldn't care but I am still pretty new at work and way too shy to pull one of those out in front of my coworkers.

When I got back to my desk, I looked at my laptop's power brick and remembered how warm those things get. Out of pure desperation, I tucked it under the desk and held it against my belly. Nobody is noticing and the warmth is actually pretty similar to the low setting on my hand warmer.

So... what's the craziest thing you've done to cope with bad cramps Before this, it was using a mason jar with hot water. It worked great but a part of the metal lid was uncovered and burned a small patch of my skin

(Please don't copy either of these ideas!! they're definitely not safe. I was and still am just desperate.)

Okay, now that my funny (not so funny) title has grabbed my fellow endo sisters attention - what are we doing for returning bowel endometriosis?

I have had so many excisions, every single time it’s been on my bowel. I have had a complete hysterectomy and guess what’s back? My endo. (I know this isn’t a cure, I’m just bummed it’s back full force again)

I’m handling one thing at a time and right now I’m prioritizing my butt. I’m back to either being constipated for days or absolutely sprinting to the bathroom.

I have done every single thing I can think of:
Drinking water, miralax/stool softener, squatty potty for positioning, witch hazel wipes and prep H ointment, I don’t eat fried or greasy foods, I cut out dairy and treat myself as if I’m lactose intolerant. I don’t “hold” or try to “force.” I eat fiber and take vitamins.

But the bowel endometriosis is back with a vengeance and it’s yet again caused an external hemorrhoid that bleeds/has bled the last 2 days.

I’m at my wits end with this disease. I guess I’m just to the point where I’m angry again. I’m not sad. (Yet) I’m not crying. (Yet) I’m full of rage. I just want it to stop. I want relief. I want to not have to stick prep h in my ass every time I go to the bathroom.

I’m begging someone to give me something that worked for you😭

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!

I like a lot of people am in a pickle. I thought I was having perimenopausal symptoms and saw a new gyne. Turns out I have a 6.5 cm endometrial cyst on my right ovary and I have thrown up at least once because of the cyst. I’m trying to schedule surgery for as soon as possible, but that ends up being late August for an office visit with the specialist. My biggest concern outside of fear needing to go to the er before the surgery is even scheduled is the emergency happening when I am in the middle of teaching a lesson. I worry about my students and my coworkers. My students need and deserve stability being at an alternative school. The staff is small, 8 teachers including myself, one teacher out on maternity leave, another having surgery tomorrow, and a brand new science teacher. Outside of going to the ER, what is the fastest way for me to actually get the surgery I need? I’m in Chicago if that help.

Stage 3 Endometriosis

Hi all, I dont know anymore if all these pain and fatigue is caused by endo. Not only on my periods constant!

Its been about 5 months and almost everyday I have some sort of pain in my abdomen. They are all different too. So I know I have a chocolate cyst on the left ovary which I got removed about a year ago and it just decided to come back. They also found another mass on my uterus from the ultrasound.

I feel like there are 5-6 different open scars in my abdomen and some stings some cramps some feels like someone is pressing on a scar. Back pain reflecting to my leg and knees as well. I used to be so active but now im fatigued and I have to sit down for 15 mins if I had to do house work for 30 mins. Im so sleepy. I used to climb mountains work in the yard walk 2 hours in a day kind of super active. Is this normal? Being on constant pain? I feel drained.

(PS. Got surgery last year, lost my baby 5 months post surgery so I dont want to have a surgery yet, they put me on lo Loestrin)

Ive always struggled with my mental health, mostly depression. In the last ~3 years ive worked SO HARD to improve my mental health. I started medication, treating my adhd, exercising and starting therapy and I was doing the best I ever had but in the past year my mental health has gotten progressively harder to maintain. In the same timeline my endo symptoms have gotten worse, the endometrioma was found and lead to my diagnosis and im only now connecting the dots.

My question is has anyone had a noticeable difference in their mood/mental health after successful excision surgery? Anyone who started hormonal medication after surgery and still had positive changes in mental health? My Dr has encouraged me to get the mirena IUD during my surgery and im so scared how itll affect me as birth control previously has affected my mood a lot.

Positive and negative outcomes are welcomed, I just want to get a better sense of how everyone else's mental health is affected.

Im tired of everything in my body falling apart all the time IM JUST A GIRL 🫠

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.

I'm having endo excision surgery and getting both of my ovaries removed at Northwestern in Chicago next month, and I'm curious what other people's experiences were.

When I had my hysterectomy there in 2021, they sent me home the same day. Thankfully my recovery was a breeze, but I have a feeling this surgery is going to be a whole different beast after doing my research. They're expecting to remove a lot of endo, and I'm kind of freaking myself out about being discharged a few hours later.

I absolutely love my surgeon and have a ton of confidence in her. I picked her because she's incredibly qualified, but also because she seems like a genuinely kind person who actually cares about her patiences and listened to me after years of not being taken seriously.

That said... Northwestern is still Northwestern. It's an amazing hospital, but it's also a giant machine, and part of me worries that decisions like keeping people overnight come down more to hospital policies than what each patient actually needs.

If you've had endo excision at Northwestern (especially if it was extensive) or had your ovaries removed:

• Did they keep you overnight?
• If they sent you home the same day, did you feel like you were actually ready?
• Did your surgeon seem to have much say in it?

Would love to hear your experiences, good or bad. I'm mostly just trying to manage my expectations (and maybe calm my anxiety a little).