After ICU-level hospitalizations, 3 surgeries related to endometriosis/adenomyosis, 20+ hospitalizations, my GP suddenly had enough of hearing about the pain I experience. He started mocking me, told me he wasn’t going to entertain my “cocktail of medicine” (which was prescribed by specialists) and when I asked about further investigation regarding rectal bleeding, he said:”We don’t need to investigate anything” and denied an endoscopy despite the ER report requiring one. It really hurts to feel like a waste of space after so much medical trauma. He won’t even see me when I try to make an appointment half the time.

TW: pregnancy

I have a history of stage 3/4 endo, two excision surgeries (most recently in 2024), a year of failed infertility treatments, and nearly 3 years of TTC altogether. I quit going to my fertility clinic months ago because I was exhausted by it. I just assumed I couldn’t get pregnant and focused on enjoying my summer.

Well, my period didn’t show up this month, and 3 tests later, I think it’s safe to say I have a positive. I am in absolute shock.

Interested to hear others’ experiences or any helpful tips for early pregnancy!

For the past 2 years+ i lived with my boyfriend so he would support me while i was on my period and if my pain was really bad he would refill my hot water bottle and hold my hand through it. That meant so much to me, but now i had to move away so i dont have that support anymore.

I just got my period for the first time since i had to leave and i feel scared how i will handle it by myself. Him being there to hold my hand helped me so much and i dont want to not have that anymore. I really hope it wont hurt too much and that i will be okay. Its so much scarier to be on my own, i wish it didnt have to be like this and i wish i didnt feel scared of my period. I wish i didnt get periods and that i could just feel safe all the time.

I know many of you have had it since day 1 of getting your period — but i’m curious to hear the experiences of those for whom that was not the case.

my periods have always kinda sucked from the start, but nothing overtly horrible (i could skate by without taking meds on most of them and use other pain relief methods like tiger balm or whatever). i started my period at 11 and went on birth control (lo loestrin fe) at 15 for acne/other hormonal issues. i was basically on that on and off for almost 10 entire years until i stopped in 2021 (in my head i didn’t need them anymore really and im gay). my periods were a total dream on bc and even after for many years they were light and mostly not painful.

since 2023/24, they started getting slightly incrementally worse with each cycle but nothing really insane. i was dealing with some other weird health issues during that time and wasnt making connections. in 2025 they got back to the original “bad” level from before birth control, and at the beginning of this year it basically FAST tracked symptoms!!!! i mean literally every single period ive had this year has been much worse with new symptoms to add on everytime. what used to be my hell week of 3-5 days has turned into a 2.5 week ordeal (not all bleeding) every month. i used to have most of the month where i could do whatever i wanted and eat whatever i wanted and now i can’t even really eat outside of my period without severe gi issues (which i’ve struggled with before outside of my period issues)

i have my first surgery in dec and i basically told my specialist to just get my uterus the fuck out at this point because i don’t have a lot of faith in the recovery (can’t take aygestin, specialist also found signs of adenomyosis) and i never wanted to carry anyways. but im kind of dumbfounded at how fast it felt like this has come on, even if some of it was incremental over the past few years.

has this happened to anyone else???

Hi! I’m 28 years old.

A year ago, I was diagnosed with two endometriomas and endometriosis. Before that, I had no idea I had it.
Since then, my life has turned into hell. I was immediately told I needed laparoscopic surgery. I was so shocked that I spent two weeks lying in bed, crying and feeling depressed, convinced that my life was over. I had never had surgery before, so I was absolutely terrified.
After the surgery, the doctors told me I had severe stage 4 endometriosis. My case was very complicated, and the surgery was long and difficult. I was prescribed Visanne for six months.
I was horrified by the thought that I had been living with such a serious chronic disease for years without knowing it. I had no symptoms, no pain, nothing. I went to my gynecologist for routine checkups every year and thought I had my health under control, but it turned out that wasn’t the case.
Five months after the surgery, I developed pain in my side, and my doctors sent me for an MRI. When they saw the results, they were shocked. The MRI looked as if I had never even had surgery in the first place. There were so many endometriosis lesions and so much scar tissue and adhesions. And guess what? I was told I needed another surgery!!!

So now I’m facing my SECOND surgery in one year.

I’m so tired of going to appointments, getting tests done, and seeing doctors. I’m exhausted! I’ve spent the entire year going to hospitals as if it were my full-time job. I live in the suburbs, so getting to my appointments takes forever. I spend three hours on public transportation just to get to the doctor and another three hours getting back home.

I’m so tired!!!

My surgery was supposed to be yesterday, but my period started that very same day! I hadn’t had a period in over six months because I was taking Visanne, and of course, it had to show up on the exact day of my surgery! So the operation was postponed for a few days.

And then I was told that one of my endometriosis lesions is stuck to my bowel and that they might have to operate on my bowel during the surgery.

I’m absolutely terrified of that. I’m scared they might damage my bowel and that I’ll have to follow a strict diet for a long time afterward. I LOVE good food, and I love drinking alcohol. I HATE strict diets. I’m only 28 years old!

The worst part is that I HAVE NO SYMPTOMS! Nothing bothers me. Nothing hurts. But I still need surgery, and it makes me so angry.

And Halloween, my favorite holiday, is coming up soon! But if I end up having to follow a strict diet, I won’t be able to drink wine or eat pizza that day. The thought of that just makes this whole situation even more unbearable!

I’m so angry and upset. It feels like this endless cycle of doctors, hospitals, tests, and surgeries is never going to end.

Sorry for all the negativity. I just needed to get this off my chest.

I recently had an MRI that showed multiple large pelvic masses, including fibroids and suspected endometriomas. The largest are around 9–10 cm.

One minimally invasive surgeon (best in my area) told me I’m not a candidate for minimally invasive surgery because of the size and number of the masses and that I would need open abdominal surgery.

I’m wondering if anyone here has been in a similar situation. Were you initially told you needed open surgery but later found a surgeon who could perform laparoscopic or robotic surgery?

Just wanted to vent/commiserate with anyone who has ever felt the same (and maybe feel a little more normal about feeling this way).

When I’m not in tons of pain, sometimes I get in my own head and start telling myself that all of these symptoms are just made up/not real. I obviously know this isn’t true at least to some extent…at the very least, I’ve had multiple ovarian cysts burst and those have caused very real pain but when it comes to the potential endometriosis I keep gaslighting myself into believing I’m being dramatic and doing this for attention (I’m sure there’s something that needs to be explored in therapy here lmao). I was put on gabapentin for a bit and that helped and I think I’ve been on my birth control long enough for it to help relieve symptoms, so I keep trying to remind myself that just because I’m not actively suffering doesn’t mean there isn’t something wrong especially after experiencing so much pain for the past several months.

I have my first laparoscopy coming up soon and I think I’m just starting to psych myself out more and more. It seems silly to other people when I say I hope they do find endo during surgery and sometimes I think it comes across like I want something to be wrong with me but I always try to convey that I just want answers…I guess it probably just sounds weird to people who haven’t experienced this before. I just know if they find nothing during surgery I’ll feel so embarrassed/ashamed!!! I keep telling myself that even if this was all caused by some bursting cysts and a tight pelvic floor that doesn’t change the very real struggle I’ve been through. It’s so strange to spend so long wishing to be pain free and now that I’m getting there, I can’t even enjoy it without feeling like I’m completely invalidating myself!

Hi ladies. :)
I’m having an MRI with contrast tomorrow. Any advice? What should I expect before, during and after the test? 😥 I’m kinda nervous about it to be honest.

I just saw a tiktok of a girl who needed a cane due to endo and the comments were so ableist and rude. Do people understand that endo is not just a painful period, it’s a condition that causes lesions and adhesions on random parts of the body. That can lead to muscle spasms and pain in your legs which make you unable to walk properly, so a cane gets prescribed to help you. What broke my heart more was seeing comments from fellow women with endo saying she doesn’t need a cane. How can you have a terrible condition yet not understand or have zero empathy for others who have it???

Three months ago, I posted about a very successful gyno visit to start investigating endo. Yesterday, I had my surgery consult. Honestly? Floored. Reeling. Shook to my core by the competency of this (male) doctor.

We all know to expect a slog, to convince doctors to even consider we could have endo, all those fun battles. Nope! The doctor said I likely have endo before I even had the chance to say much. As my gynecologist told me, he's very into explaining things, so the appointment was this amazing crash course in what my symptoms probably mean, what my options are, even down to walking me through what recovery looks like after surgery (including separate explanations for whether the surgery will require a chest tube). I had no questions, even the niche things I came in with, because he hit every single point on his own. I've had reason to suspect diaphragm involvement, which has the potential to explain some of my general diaphragm and breathing issues (separate from POTS). My research led me to believe this is rare, so I also expected some convincing here, but as soon as he heard right flank pain he was all over that. I was also nervous because my symptoms disappear for months at a time, then flare for months at a time, so I thought they would be suspicious of that (even though it's normal), or that my current resurgence of pinched-nerve-related back pain may cause delays to "rule other stuff out," but they didn't bat an eye.

They did have to do a pelvic exam, so I was psyching myself up to ask for a medical chaperone since I don't generally tend to let men get involved in my vaginal health. However, when they left for me to change, they said they'd be back with a chaperone, no asking necessary. The exam itself was SO validating. I know I have pain, I'm hypermobile and probably have hEDS, so I expected pelvic floor instability too. They did the thing where you push your knee out to see if the pain gets worse and boy did it! Having that added step to the exam made me realize there's more pain than I was aware of and, though I didn't doubt myself, that this is real.

The other thing that delighted me was that no one in this process has cared that I'm not worried about getting pregnant because I don't think my body needs to carry a baby. He noted that was in my chart, explained that he's had POTS patients with endo who experience enough relief that they eventually feel up to bearing children, but also immediately said something like, "but that's not relevant for you since it isn't a concern." Like, made sure I knew my options but had no opinions on me not wanting to get pregnant, zero sass or condescension in his voice. I was also worried there would be more hoops to go through before surgery, but that's next on the list! He gave me all the options I could try before surgery, too, but he fully understood why confirming whether or not it's endo is important for me as someone with multiple chronic conditions.

I was sent home with the typical appointment summary, only this packet included tons of PT recs with his top pick highlighted, general info on pelvic floor therapy and some additional resources to help me get started at home, and some information about the new meds prescribed. New meds!! I was diagnosed with POTS 5 years ago, immediately put on propranolol, but that's it. Nothing since. This doctor prescribed me a higher-dose NSAID since Advil is ineffective enough for my amount of pain that I don't really bother taking, though I could probably use it multiple times daily. He also prescribed something for when the bloating/gas episodes happen. Could never have expected help on top of help on top of a good appointment!

I also learned some neat things that contradicted what I had read about diaphragmatic endo. I was under the impression this is fairly rare and requires a completely different surgery since it's in the upper half of the abdomen. Obviously, this may depend on the hospital and their facilities, but now they actually just make the incisions closer to waist height so the tools they use can go both up towards the diaphragm and down into the pelvis. The only difference here is that I need a thoracic surgeon on standby in case there's more involvement than expected (and this is where the chest tube could come in)! He also told me that about 1 in 12 people with endo actually have spots on their diaphragm, they're just mostly asymptomatic for reasons they don't understand.

I don't usually like to give specific doctor names publicly since it exposes where I am, so I may end up deleting this part, but I can't keep such valuable resources to myself. Both doctors are north of Chicago with Endeavor/North Shore (and take BCBS Medicaid). The gyno I saw from my last post is Dr. Kathryn McCarthy and the surgeon I saw for my pain consult is Dr. Richard Cockrum. Both offices were easy to navigate and staffed by kind people. What's more, both doctors also have plenty of experience with POTS and EDS, as there is plenty of overlap. This makes such a difference when you have overlapping symptoms, but it was especially helpful when speaking with Dr. Cockrum since he's familiar with EDS-related pain and was able to refer me to a PT with tons of experience with both hEDS and pelvic floor instability (who sadly isn't in network with my Medicaid). I want to emphasize, too, that they are familiar with these conditions. A big concern for me when I saw Dr. McCarthy was that my symptoms would be dismissed as probably being related to POTS, but she immediately clocked that something was off, even on top of nervous system dysfunction. I just can't comprehend the level of care and validation I've gotten from these doctors, and I am so grateful to be spared the tumultuous experience most other endo patients go through before being diagnosed.

This journey started last summer for me, and I didn't get insurance until this summer. I may not have answers yet, but I can't believe I'm already preparing to schedule surgery three months after my first gynecology appointment! I really hope me sharing this can give someone else a ray of hope, but I especially hope that my doctor recommendations will help someone get the care they deserve :)

Went to the gyno today and they say start with progestin only bc. Trying to be open minded but having an absolute shit week and day (had to put a beloved pet down on Tuesday and on the very worst day of my period rn) and I have to go back to work.

I'm pretty sure progestin only bc was what I took in college and my experience was awful - I lasted maybe 6 weeks on it. I'm hopeful that it'll be different this time, almost 20 years later and understand that the doctor has to start somewhere. But the thought of trying different bcs in the hopes that something helps while working full time and dealing with side effects sounds way too hard rn. I don't have the energy for that. I just want to feel better. At least with surgery you get medical leave lol.

I'm already coming into this with a bad attitude about women's health but can you blame me. Thought I had endo for years but never really got anywhere with docs about that. Then at 33, after having a copper IUD for 4 months, I got a positive pregnancy test. This was right around when roe v wade got overturned so care was dismal and like a month later I finally got emergency surgery and lo and behold they found an ectopic pregnancy and stage 4 endo. I know I probably need therapy too lol but right now I need to stop crying in my car and go back to work awful awful awful.

Just bleed through my pants too. This is some bs.

Any tough love or kind words. Thanks!!

Hey fellow warriors.

I may be mellow dramatic, but do any of you experience INTENSE muscle weakness and cramps? Nerve pain also?

My forearms and hands are incredibly weak this month. Trap muscle and shoulder blade pain too. Neck pain and tension headaches.

I’m literally spiraling HARD, concerning myself with having ALS, which is a death sentence. Anyone experience these symptoms?

I do have Endo, confirmed via laparoscopy this year on my birthday.
I’m age 32.

Thanks in advance,
Xx

Does anyone else experience a sore or bruised like feeling in their chest around their period?

Ever since I was diagnosed a year ago I have been very analytical about tracking my symptoms. I started my period today and I noticed how uncomfortable my chest was, I was getting this deep cough because it idk how else to explain it the area just feels stuffed up?

I cant add a pic but the pain is kind of like slightly to the left (and right, just mush less on the right) of the kind of flat chest bone your ribs connect to.. if that makes any sense 😅

it really is more of a bruised feeling especially if I press on it and it makes it hard to take a full deep breath. After looking back at my logs it appears to be cyclical just like a lot of my other symptoms but its gotten noticeable more uncomfortable each month. Im assuming it has to do with inflammation/endo since it's clearly cyclical around my period but I have no idea 😭

So I just another rant my fatigue is like horrendous. Has anyone had this with Endo and has anyone have like normal ultrasounds but gone into surgery and finding it has anyone done pelvic congestion, doctors and what are their thoughts on that what has helped has not helped thank you so much for responding.

Seeking advice on some questions to ask an end surgeon prior to deciding on surgery or if they’re the right surgeon. Long story short, I have had a couple of appointments with a complex pelvic surgeon specialising in endo removal and pelvic oncology. She’s in the private sector and seems to have great experience from top hospitals and uni in the country, overall great on paper. She diagnosed me pretty quickly purely based on symptoms and a physical exam (one of my symptoms is painful sex) during which she stimulated the side pelvic muscles with her finger to see how sensitive they are - it was bad. We trialed Slynda for 6 months, however I’ve had horrible side effects and the pain and bowel symptoms did not go away. She also sent me to a dietitian and physiology specialising in endo related issues - didn’t make much of a difference. In the next appointment she prescribed me a different pill to try, alongside an anti-inflammatory drug, but also said that at this stage she would recommend surgery to properly diagnose and remove endo, of course I don’t HAVE to do it but because the pain persists its an option. She mentioned as post operative care they can insert an IUD while im still under after the surgery. Throughout the whole diagnosing journey she hasn’t ordered any scans (I know it often does not show up on scans), and it makes me feel a bit uneasy that the diagnosis came so easily without much “hands on” checking. I worry (as most on here) that if I agree to surgery, there’s a potential that nothing will be found. I voiced this concern to her, to which she said it is very rare that there is completely nothing there. She also said that her patients have a 85% improvement in symptoms within a year post op, and 15% don’t feel much change, but there isn’t a lot of patients that experience a worsening of symptoms which I am also worried about.

Overall, I believe she’s a good surgeon, but I wonder if anyone else was diagnosed so quickly by a specialist? I have the same overlapping symptoms of adenomyosis, why didn’t she mention this potentially? Please share your thoughts and any questions you asked your surgeon or wish you had asked them. Thank you!!

Hello, I am planning on getting surgery soon with Dr. Matthew Fore with Stanford Medicine. Please has anyone had experience with him? So far, he seems very wonderful but I want to see if anyone has any input. Thank you.

It’s been 22 years of unexplainable pain now. Years of inconclusive GI work ups. And I finally brought up my situation with my OBGYN today. Advocated for myself, with my voice shivering.

She ordered me a transvaginal ultrasound, which is a little nerve wracking. I’m a virgin and even her finger today hurt. The specialist I’m seeing next month is a man, too - which is frightening for me. I never wanted a male doctor, but unfortunately options are limited here.

I think one of the worst parts is the self doubt. The wondering if I’m just being dumb or crazy, if I’m doing all of this and traumatizing myself and my body for nothing at all. I don’t want Endometriosis - but I also want answers. I don’t wanna be in pain anymore. I wanna know what’s wrong with me.

Anyone else feeling/ever felt the same?

I keep smelling a really bad smell and sometimes a sweet smell or rotten smell , this has happened a lot since my diagnosis does this happen to anyone else ? I keep trying to find the source of the smell but I can't find it

For some background, I had excision surgery + Mirena insertion done by a specialist in April 2025. While my pain was not totally gone, it had definitely improved. In January, post a very traumatic breakup I decided to invest in myself. I started eating mostly anti-inflammatory, going to acupuncture, working out at home, and I lost 60 pounds.
I also have PCOS, so the weight loss triggered my period to be more consistent, regular, and heavier.

In june this year my pain returned. I got an MRI and it showed adhesions along with return of endometriosis.

Historically, I have been very anti-hormonal treatments. I find myself to be very sensitive to hormones. After seeing multiple specialists, I am at the understanding that no one is going to attempt to help me unless I at least try additional hormonal suppression.

I started norethindrone about a month ago. The nausea is awful, my pain is the same, but my mood has taken the largest hit. I feel mostly, nothing. Normally, I am generally a grateful and happy person. Prior to this medication, I often felt so fortunate for the sunshine, my friends, and everything in between. Now, It takes an act of god to get me outside. Routine tasks are so difficult, food does nothing for me, and I just lack joy. I miss feeling joy. I miss feeling excited about anything.. My personal relationships are starting to take a hit and I just don't even have energy to try and fix them.

Has anyone taken this med, and had similar symptoms? I am seriously concerned and scared that once I stop taking it, I won't return to myself. Has it actually helped anyone? Is there hope beyond any of this?

Not entirely sure if this kind of post is allowed, so apologies to the mods if it isn't.

Hello all,
My girlfriend had surgery about two-three months ago & had a Mirena put in. However she has a few other conditions that have made her recovery absolutely brutal & will probably have to go back in to get the Mirena removed, but that's not what this post is about.

None of her pain relief has been working (and she's tried pretty much everything) & she's in excruciating pain on a daily basis, so isn't really able to leave the house & has to spend most of the day laying down. She also has low iron & chronic fatigue issues, which make it difficult to be standing/walking around for extended periods of time. She's said to me on multiple occasions that she's having a really hard time mentally, since she feels so incapable of doing anything & she wishes we could go out on outings & dates like before her surgery. We've tried a few times to go out for dinner or to a sporting event together & she always says she's fine & tries to push through, but I've seen how exhausting & uncomfortable it is for her, and I feel so horrible & guilty about what she's putting herself through just so we can spend time together.

I'm doing absolutely whatever I can to try and take her mind off of it & give her little things to look forward to, but most of the time it seems to consist of sitting & watching her comfort shows (we've been watching The Rookie together). I absolutely love doing this with her & she's got me hooked on the show, but I'm trying to come up with things we can do at home to mix it up a little bit. She absolutely loves arts & crafts (which I'm hopeless at but would love to do with her anyway) & baking, whereas I'm more of a board/card games & puzzles type of person. We both love doing each other's interests, but it's so hard for her to focus on a board game or a puzzle when she's in so much pain.

Does anyone here have any ideas on little dates we could do at home?

Okay, so my surgeon (Dr.Lucas in Maine) told me to expect roughly $8,000, and I looked It up and the average cost in my area is $7-12k. So where the heck does $80,000 come from? I know surgeons and hospitals have different fees, and this is literally JUST the hospital bill. Is it most likely a mistake or accurate?

Im genuinely freaking out. I work one day/week due to my symptoms and the expected $8k is already out of budget. I have insurance as well so im really confused. HELP

For the first time i feel my heart aches, i feel bad for myself, i feel i let myself down. Ive been healthy all of my life how did i get endometriosis and adeno at once?

My whole future has kids around it. I dont know what did i do wrong. I dont.

It hurts. I don’t know what to do. I dont have a partner. How will i find a partner? Should i tell him i have these ? I am really llst

Hi I’m dealing with a 7.5mmx8.4mmx6.7mm large cyst on my left ovary. I have already lost my right ovary to a similar sized cyst 3 years ago and I’m trying to preserve fertility. I feel this cyst every time I move it’s like a hernia, I feel the weight and the heaviness. I start a new job in a week and apart from increasing pain killers I’m not sure what else I can do. I also wear like a belly band to hold it together cause it’s just an extra weight on my stomach. Any tips on managing it? Last time I had surgery within a month this time it’s not an option for a while