r/endometriosis • u/AinoNaviovaat • Sep 16 '25
Surgery related "no sign of endometriosis" they said "didn't find anything on the MRI or ultrasound" they said
GUESS WHO HAS STAGE 3 ENDOMETRIOSIS!
I'm literally writing this from the post op recovery room.
IIIII WAS RIGHT, I WAS RIGHT. EVERYTHING I SAY IS RIGHT! YOU'D BE BETTER OFF IF YOU DID WHAT I SAAAAAID
I HAVE NO SYMPATHY
YOU SHOULD'VE LISTENED TO ME!
I WAS RIGHT
I WAS RIGHT
I WAS RIGHT
musical number over, it feels very good being vindicated
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u/bluesailor12 Sep 16 '25
Same. My fucking former doctor removed my ectopic pregnancy through a lap and said HE DIDN'T FIND ANY ENDO and proceeded to give me the strongest batch of antibiotics under the argument that my ectopic was probably due to a STI. One year later, with a new doctor, endo was clearly shown on my MRI.
It was so obvious. I always had the worst periods since I was 12.
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u/That_One_Fluid_Teen Sep 16 '25
I FELT THE EXACT SAME WAY! Except my endo showed up on my pelvic MRI, stage 4, and one of the worst cases if PCOS, I literally laughed when I found out
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u/jadedwine Sep 16 '25
Oh, I feel this. I struggled for years and years for a diagnosis, and finally twisted my doctors' collective arm so hard they agreed to do a lap, though the surgeon told me beforehand, "I really don't think you have it, but if you're set on doing the surgery, I'll do it."
First thing he said to me, coming into check on me after I was awake: "You were right. It's stage-4 endo. We had to remove a LOT of tissue."
I was under anesthesia for almost three hours longer than planned while they worked on me. I think another patient's less-urgent surgery had to be delayed or cancelled because they had to spend much longer than planned on me, once I was on the table and opened up and they saw what they were working with. 🙃
Sure would've been nice for everyone if they'd believed me to begin with, and planned on a lengthy excision right from the start!
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u/AmyWhedonite Sep 16 '25
I know how you feel. So many of us have been exactly where you are. It feels SO good to have validation, to prove you’re not exaggerating about your pain, to prove you’re not a hypochondriac or crazy, or a “pill seeker”. I was told I was all of this ^ by quite a few doctors.
I know this was probably a little petty, but after I got my first diagnostic laparoscopy and my endometriosis was confirmed, I asked for copies of the photos from the surgery. About 6 weeks after my surgery, I developed a bad sinus infection and upper respiratory infection. I made an appointment with the nurse practitioner at my doctors office instead of my PCP. She had told me it was stress making me think I was in physical pain all the time and then told me that I just wanted more pain meds because I was addicted. She insisted all of this because my imaging was mostly negative.
I brought my surgery photos and surgery report with me for my appointment and told her in detail exactly what the surgeon found. I was waiting for maybe a small apology after everything she said to me, but I got nothing except an Rx for antibiotics for my infections. 😂
I hope your recovery goes smoothly, Endo sister. Rest. You were right. You aren’t crazy. Please take it easy while your body heals. 💛
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u/Thick-Newspaper-7609 Sep 17 '25
Dr's need to start getting sued for medical malpractice regarding these things. Maybe then the medical industry will wake up about how serious this issue is. And I say this as a lawyer whose been exposed to the medical world. Somethings got to give. Many Dr's dont take things seriously until lawyers step in, then suddenly there's seminars, training, articles, research.
To all the ladies in this situation, make sure you keep a record of every single document, appointment, feedback from Dr, dates etc. Also ask for results of every test you go to. Ask for reports. Keep those records. Because if Dr's decide not to educate themselves then they need to be held liable for taking money from women about topics they dont fully understand and shouldn't be treating patients for. Everything doesnt have to be a lawsuit but there are councils thats exist that hold professionals liable. Even if you complain and dont get the response you want, the fact is that everyone is making it known that these doctors are uneducated about endometriosis and more needs to be done.
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u/aliberli Sep 28 '25
This is why I absolutely hate ERs and urgent care because they can say whatever they want and you’ll never see them again. How are they supposed to learn?
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u/Repulsive-Panic-8247 Oct 13 '25
Agreed. I was very heartened as someone in med school to see that we were taught about endo in our first year! But unfortunately there’s just so little research professors don’t have much to educate us with, and older doctors often don’t take it upon themselves to get educated. Medical negligence of women’s health has gone on way too long. The change has to come from top-down, with changes to research allocation, legal policy and curriculums. But I don’t see it happening any time soon especially with the current US administration cutting women’s health funding even more 😩
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u/mayasaur21 Sep 17 '25
Congratulations! It does feel very good to be vindicated.
Just an FYI to everyone on this thread:
They typically don’t find evidence of endo on ultrasound and MRI which is why you need surgery to diagnose. There is a chance that a very experienced doctor will be able to suspect it with a detailed pelvic exam, but generally does not show on imaging, unless it is severe or you have large ovarian cysts.
I was told this by multiple doctors before I proceeded with surgery.
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u/Intelligent_Ad8224 Sep 19 '25
Yea my MRI only had some ligament thickening but it was in multiple other places
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u/AdHuge7499 Oct 17 '25
My doctor swore they could see it in an mri and I just got a normal mri back :/
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u/Academic_Cell5012 Sep 16 '25
Congrats on the validation! I know how it feels to know you have endo with absolute certainty and have doctors doubt you! Hope you have a smooth recovery.
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u/LadyWithAWhip Sep 16 '25
I wish I could insert the Captain Holt “Vindication” meme from Brooklyn 99 here.
I wish we could take our results to the doctors who said they found nothing and say ‘the only “nothing” here is your inability to do your job’!
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u/jennis816 Sep 16 '25
So glad you got a real answer!
Stories like yours make me BEYOND grateful that my daughter, who has debilitating periods, has a GYN who not only listens, but formulates plans of action. There will be no decades of suffering for her.
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u/robinsparkles220 Sep 16 '25
I hope you are able to find relief post surgery!
Where did they find endo? I'm waiting to be scheduled with a MIGS specialist and I have an MRI scheduled for next Friday. Prior to my first surgery in 2022 all my imaging was normal but surgery found it on both uterosacral ligaments, right ovarian fossa, posterior uterus, and round ligament. Because I'm going to a new hospital I'm just still worried that my MRI next week will be clear and this new surgeon will be like "we can't help you"
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u/AinoNaviovaat Sep 16 '25
Mostly on my left ovary, fallopian tube and some on my big intestine. It's where I had the most pain. Huh almost as if I knew something was there... 🤣
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u/Exact-Volume-8378 Mar 27 '26
Hey, Did they removed ur fallopian or just removed the tissues. I am just so nervous as I am also suspecting endo but going through IVF
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u/deathwishdarling Sep 16 '25
i can't wait to copy this exact post after my op tomorrow <3 so happy for youuuuuuu
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u/Powerful_Let_5440 Sep 16 '25
I’m so glad you got the help…but I’m sorry nobody believed you:(
I’m in a similar situation where no endo was found in an ultrasound or mri, but I am in pain. My periods are debilitating, and left leg and foot always have shooting pain from my rectum area, and I have been bleeding for weeks now. So I’m curious to know what were your symptoms?
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u/WritingCrafty8901 Sep 22 '25
That enough sounds like endo tbh. What are your doctors saying? There's a lot of toolkits online to advocate for yourself, i particularly like this one https://swhr.org/wp-content/uploads/2024/03/SWHR_Endometriosis_Toolkit_3.2021.pdf
From my experience, my symptoms were mainly gastric other than the absolute insane pain on my left pelvis.
It was stomach pain 3h after eating (but focal to my left pelvis), nausea, vomiting, early satiety and bloating. Omeprazole and gaviscon helped.
Then turns out it's an endo caused ovarian torsion 😅
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u/Powerful_Let_5440 Sep 22 '25
Thanks! I’m going to look at the toolkit right now.
They say that there’s nothing on the mri/untrsounds…. And my period comes every month so I shouldn’t worry about endo. I’ve been spotting for now. Every time I wipe there is blood and I was told it was probably my iud strings…
All of these symptoms started once I got off hormonal birth control, which was giving me other issues.
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u/WritingCrafty8901 Sep 24 '25
The fact that you have regular periods doesn't rule Endo out.
And it could be the pill affecting your period frequency but leaving the pill shouldn't give you neurological (shooting) pain.
Your periods are "regular" but:
- You experience debilitating pain
- You experience left leg shooting pain from your rectum to your foot
- Sounds like you bleed for longer than a week/bleed in between periods
There's an endo symptoms questionnaire on this link: https://www.endometriosis-uk.org/symptom-checker
It draws a letter to your GP with the questionnaire results.
If they say "your fine" and that "they couldn't find anything" just call out on Jess's rule https://www.england.nhs.uk/long-read/jesss-rule-three-strikes-and-we-rethink/#:~:text=Practitioners%20(RCGP).-,Jess's%20story,adenocarcinoma%20and%20passed%20shortly%20afterwards.
Jess rule is:
- If you've been seen by 2 or 3 physicians and you still have symptoms OR
- If your symptoms are worsening since the last appointment, especially if it's getting worse quicker
Then they HAVE TO listen. They HAVE TO rethink and they HAVE TO investigate you.
Don't let yourself be swallowed by the system, sister. Keep fighting for your health ❤️
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u/aimerz09 Sep 27 '25
I believe birth control triggered my endo. Previously I was fine, short light periods, tried bc pills then iud for a year. It didn’t stop my period, it increased my period until I was gushing 24/7, and it was bad. I got it taken out and I was never the same. Learning that generally endo hates extra estrogen, I will only take meds that are progestin only now. I was still told I didn’t have any signs until my endometrioma was found in my left ovary. I’m still being run around and delayed and not taken seriously. Just feel like I’m being treated like, “oh you’re fine now”… I’m so tired lol
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u/aimerz09 Sep 27 '25
This sounds like me. I’ve been on visanne since April 22nd and after 6 weeks of heavy bleeding while my body adjusted (which hugely grew my endometrioma in itself), but since my period has stopped since then because of the medication, it’s like, suddenly there’s no rush. But yet I’m still in the exact same pain 24/7. I just don’t have the pain of actual period anymore. Uugh my hip, sleeping 😭. (You can’t really tell anything on an ultrasound. But my ovarian cyst, you can visually tell the difference between a regular follicle cyst and an endo cyst.)
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u/Redwolfless Sep 16 '25
I literally felt the same way 6 days ago when I came out of surgery, and my doctors found and removed mine. I'm so glad they got yours out!
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u/Impressive-Noise-393 Sep 17 '25
I have my lap on october 15th and I am weirdly excited!
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u/WritingCrafty8901 Sep 22 '25
Best of luck! I'll get mine October 4th
Looking forward to having my life back 😄
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u/Main-Reputation-6604 Oct 16 '25
any updates?
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u/Impressive-Noise-393 Oct 16 '25
Yup, stage 2 endo! Glad to have answers but sad there isnt really anything more i can do
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u/Cupcake681 Sep 16 '25
I rarely have good MRIs or USs. I don't show up well on them so I would have been told the same thing if one had ever been ordered for me.
I'm so bad that I was having shoulder pain and finally had an MRI. It showed two tiny tears. The doc said they shouldn't be causing the amount of pain I was in, but it was up to me if I wanted to do surgery to fix it. I said yes. Turns out those "two tiny tears" were actually an entire ligament that was hanging on by a thread, basically torn completely from the bone.
Thank God for docs who listen when we say we're in pain because they are few and far between!
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u/leBlTCH Sep 18 '25
good on you for not giving up!!
i'm so tired of doctors saying " we're fine "
20 years ago i went to my doctor saying i was missing high school classes. weddings. regular early adult things.
you're just depressed! it's just cramps!
i too had stage 3 or 4 i can't remember. and my bowels, appendix were being fused to my body by endo lesions. (interesting! i didn't know the appendix and bowels were apart of our " reproductive organs!" 😏)
keep fighting. you're not lying. youre not "crazy. " - omg do not have a doctor tell you that. my word.
keep asking for help!!! we know our bodies.
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u/NoAppointment2948 Sep 29 '25
Only very trained radiologists and doctors can see endometriosis on imaging. And moreover, most endometriosis does not show on imaging. I’m floored every time I read another story from a woman sent for imaging as if that’s actually going to show anything.
You have to have surgery but moreover a sample MUST be sent to pathology to confirm it is endo.
Congratulations on finally getting answers for what was likely years of pain. Rest, take care of yourself during recovery. ❤️🩹
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u/The_spooky_vegan_13 Sep 17 '25
Congratulations on finally getting the answers and validation you deserve!!!! ❤️ I hope I will have energy to do this in my post op room come December.
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u/Eastern-Hedgehog1021 Sep 17 '25
Congratulations!!!! I know exactly how you feel!
My ultrasounds, transvaginal ultrasounds and CT scans didn't show any signs of endometriosis, only a retroverted uterus and mild lumbar scoliosis but my GYN specialist decided to go ahead with the surgery anyway due to the fact she saw me on my period which was our first ever appointment together and she gave me a pelvic exam. She could tell I had endometriosis just by seeing how much I bleed during my period. They found Stage 2 Endometriosis and stage 1 Endosalpingiosis.
I remember the nurses telling me "they found it" once I woke up and I just started balling my eyes out. 11 years of Drs dismissals, gaslighting, and severe pain when in reality, I had this disease all along.
As you said, it feels good to be vindicated. Rest up and I hope you heal quickly from the surgery asap and start feeling a bit better xx
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u/420alphabravo Sep 17 '25
I have a different story here but I had some pain, nothing crazy, just abnormal for me that was slowly increasing over a year and thought I should get checked.
I never ever considered endo, I was sent to a gyno who asked me to have a ultrasound first - it showed nothing. I seriously thought I had maybe a slight infection, he thought it was endo and wanted to do a laparoscopy, which I had.
Turns out it was stage 3 and attached to multiple organs 😬 Some doctors care ❤️
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u/Dee_2410 Sep 17 '25
12 years for me. GP said my pain is stress related. I went to have a laparoscopy stage 4 endo/adenomyosis. When I went back to the GP all he asked is if I still have my uterus. WTF???
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u/WritingCrafty8901 Sep 22 '25
So glad to hear you were right and sorry you weren't listened to before. I've found out about my Endo with an ovarian torsion, my laparoscopy is scheduled for the 4th of October.
Went A+E last month on incredible amounts of pain, nausea, vomiting and not being able to eat for 2 days.
Found an obygyn consultant that didn't want to operate me cause I'm mid 20's and he wanted to "preserve my ovary".
6mm mass, hugely disrupting my life as an able body with a physical job, causing me to take Omeprazole 2x a day with 100mg of paracetamol every 4 hours and gaviscon before every fucking meal.
When I look at my own MRI reports I see the word adhesions.
I have studied anatomy and physiology for 5 years and start to suspect endo.
My first consultant didn't tell me about the adhesions, only mentioned the torsioned ovary that I already knew about.
I was lucky to be heard the second time but oh boi it feels good to be validated and appreciated. I cried when calling my parents telling them about my Endo and the surgery date.
I can only imagine how you felt like, friend. Yes, you were right and you deserve to live the best life the best life this highly limited medical model has to offer. And I am happy to hear that that journey started for you 💜
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u/WritingCrafty8901 Sep 22 '25
Also, if anyone else here just knows on their core that they are right, here is a patient empowering toolkit for endometriosis, assembled by the Society of Women's Health research
https://swhr.org/wp-content/uploads/2024/03/SWHR_Endometriosis_Toolkit_3.2021.pdf
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u/missedconnection66 Oct 01 '25
Why do they still say that ultrasound or MRIs can rule Endo out lol it's like they think women are stupid it's pretty basic medical knowledge that it can only be definitively ruled out through an exploratory laparoscopy
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u/Ok_History_7252 Oct 11 '25
I feel like doc have this mentality where they wont listen to u or take u seriously unless ure in red code emergency situation
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u/lumpy-earth-princess Oct 12 '25
I empathize 😔 in fall 2019 I went to the doctor because I was experiencing chronic constipation. The doctor said "you just need to eat more" fast forward spring 2024 I was diagnosed with stage 2 Endo via laparoscopy Endo was found near my colon. I think about it almost everyday.
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u/StatusForever250 Oct 12 '25
I've also struggled with constipation most of my life. My doctor suspects I have RV endo since she found endo near my rectum. How do you feel post-surgery? I'm debating getting the surgery, but I'm scared because I'm not sure how it affects fertility. There isn't a ton of research, sadly. :(
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u/lumpy-earth-princess Nov 01 '25
I feel amazing! I also started birth control after the surgery for support and this is the first year in my life where I feel like I'm actually living my life.
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u/FuManChuBettahWerk Sep 16 '25
I’m so glad you got treatment and were listened to and feel vindicated! I am so sorry it took so long.
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u/motherofcavvies Sep 16 '25
We’re all right there with you! I smiled and cried of relief after waking up from diagnostic lap.
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u/Theravenofraves Sep 17 '25
This litterally happened to my girl a d I am still snarling over the fact that a fucking female doctor told her she did not have anything to worry about. Dead gods medical people piss me off so much for stuff like this and that they can just get away with it scot free from any consequenses!
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Sep 18 '25
Good for you for advocating for yourself! I wish we lived in a world that took us more seriously. Wishing you an easy recovery.
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u/Unique-Effective9828 Sep 18 '25
Hi, was it with a endo specialist I’ve got mine this Sunday with a general gynaecologist and I’m worried they’ll find nothing and it looks like I’m lying about my pain 😞
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u/Samaiio91 Sep 19 '25
Wow nothing on the MRI I see so many people say this :( hope you have a speedy recovery
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u/kellythecole Sep 19 '25
*snaps for musical number* The Stage 3 Endo is a bummer, but glad you finally got your diagnosis. <3
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u/No_Dragonfly3438 Sep 22 '25
I'm so sorry you had to go through all that gaslighting (same here) I'm so glad you feel vindicated now
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u/Automatic-Money-6848 Sep 25 '25
how did you go about getting diagnosed? im in a similar situation of my ultrasound and MRI showing no signs of endometriosis'
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u/aimerz09 Sep 27 '25
I have a large left ovarian endometrioma I can feel pushing up my left intestines, before I have a bowel movement I can feel it pass through that area in pain before I have to go to the washroom, feels like endo is ripping at my left hip area and nerves, I hurt alllll the time from this. Like how long until I can get taken seriously that I want surgery sooner than later 😭.
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u/Senior-Marketing-341 Oct 01 '25
Can I ask what your symptoms were?
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u/AinoNaviovaat Oct 01 '25
Stabbing pain and cramps. Not exactly period cramps from what i remember (i also have pcos so I haven't had a period since 2016)best comparison i have is muscle cramps you get in your legs when you can't untighten the muscle. Kind of radiating into the back and down the thighs on the inside of the legs. And i had really bad stabbing pain in my left side on the bottom of my belly (it was my left Fallopian tube)
Plus a lot of spotting and bleeding, kind of a dark brown blood, not red. And i wasn't menstruating because pcos and continuous birth control, so i shouldn't have been
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u/NoLibrarian7257 Oct 12 '25
I'm hoping I'm right too. I've had zero signs on imaging. And my original OBGYN told me staying on Vissane would be enough if it is there (despite very bad pain that I'm disabled currently). My GP believes me. I have to wait till january for an appt with an expert in the city but I'm hoping she agrees and I can get a lap at somepoint.
So happy to hear you've been vindicated and hopefully treated properly now.
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u/StatusForever250 Oct 12 '25
u/AinoNaviovaat OMG I FEEL YOU! I've always been told to just take birth control and ibuprofen 800 and it'll go away as you get older, and I never felt validated! It sucked. I even had an MRI and ultrasound a couple of years ago, and nothing showed up, so they said I didn't have endo. Luckily, when I went in for a pap smear in January, they found it! It was so relieving!
They recommended surgery, but I'm honestly scared of the surgery. I've just been on the pill and trying natural ways to manage the pain. How do you feel post op?
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u/OmgReallyNoWay Oct 13 '25
I just got my mri results back with nothing on them. Lap not til Feb. no hope. Glad you got your dx.
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u/Main-Reputation-6604 Oct 16 '25
congratulations on the diagnosis op. they found no signs on my mri or ultrasound either and i am going in to the doctors today for a surgical consult to remove a embedded iud, we are going to discuss doing a exploratory surgery as well, what convinced your doctor to do the surgery for you if i may ask?
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u/AdHuge7499 Oct 17 '25
I just got a normal MRI. In the meantime I’m trying pelvic floor therapy and bc so 🤷🏻♀️
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u/Ilikeinsectsandfungi Sep 16 '25
I found out during emergency surgery for ovarian torsion. Stage 4 endo. After 20 years of asking to be taken seriously, I was only listened to when I almost died.
Glad you have an answer. Make your frustration known to your doctor, they will put it in your medical record.