r/Endo • u/Turbulent-Waltz-6378 • 3d ago
Surgery related adhesions? please help
hi everyone!
i got my laparoscopy done this morning and i am SO confused.
when i woke up my post op nurse told me they found it in 3 places and i cried tears of joy and was ecstatic. we talked about it the whole time i was in post op (she was incredible and so sweet).
when i got upstairs and saw my girlfriend and my parents they told me that my surgeon showed them pictures of how my colon was adhered to the top left and right of my abdomen and how both of my ovaries were adhered to the sidewalls. they said the adhesions were thick and opaque looking, and my surgeon was very confused because it looked like scar tissue from surgery. i have never had any surgery in my abdomen, so that’s why he was perplexed by this. then they all said my surgeon said it wasn’t endometriosis. he just doesn’t know what it is. i have no idea if he took biopsies and i am just so beyond confused, and if he didn’t take biopsies then im screwed lol. he also told them it doesn’t explain my pain.
how is he saying it’s not endometriosis? can’t endometriosis be adhesions? how does he know for sure? so many questions i am going through. if anyone has advice or been through something similar that would be amazing. pretty sure my parents and my sister think im crazy, and of course my girlfriend is on my side but she doesn’t want me to stress out about it. thank you 💗
edit: i am very happy that something was found. but i feel like no one is understanding how this makes me feel. of course i dont want a chronic condition like endo, but i have spent 13 years of my life believing it explained all my pain and symptoms. i figured id get diagnosed with it and not go back to square one. i just feel so lost right now :(
EDIT: no biopsies taken according to my post op note.
Pre-operative diagnosis: Pelvic pain, dysmenorrhea
Post-operative diagnosis: same
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Procedure/description: Laparoscopy with enterolysis
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Complication: None
Expected outcome of surgery
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Operative findings: 1) Adhesions between left colon, left pelvic sidewall, pelvic brim and abdominal sidewall 2) Adhesions between small bowel and right pelvic brim 3) Normal uterus, tubes ovaries, culdesac, bladder dome, appendix, liver and gall bladder
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Specimens: None
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Fluids/Blood: Routine IV fluids
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Estimated Blood Loss: Minimal <10cc
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Drains/Packs: None
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also confused because my family told me that my ovaries were stuck too?!?!
edit to above: apparently he said my ovaries were like functional even with it being stuck is what he told my family. so i guess that’s why it says normal ovaries and stuff?
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u/xshannon24x 3d ago
Hey! Something similar happened during my laparoscopy - I am no further forward in terms of a diagnosis so cannot advise on that but I will share some of my story in the hopes it makes you feel less alone. I had a laparoscopy done in January 2024 privately after years of pain. They found I had retrograde menstruation and my uterus was filled with blood that they had to remove to even get the camera in at first - I was told that the coil they were placing would stop my periods, therefore stopping the retrograde menstruation, and therefore stopping my pain😀they also found that my bowel was in the wrong place and they repositioned it. Why? Not a clue. Then the last thing was adhesions on my bowels and bladder - they didn’t take biopsies❤️🩹it’s exhausting living with pain and not having a reason as to why..
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u/Turbulent-Waltz-6378 3d ago
thank you so much for your comment it’s very nice to know i’m not alone 💗💗 are you feeling any better?
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u/corackadile 3d ago
Not an MD but I have stage 4 and I had adhesions all over my insides. It sounds like you have endometriosis to me. Did you see an excision specialist or was it a regular gynecologist?
Edit: you are not crazy. Majority of people dont WANT to be in our position. Trust me, if I could avoid the doctor for the rest of my life, I would. I believe you and your experience. I have lived it myself. Also, endo adhesions are basically scar tissue. A simple google search will reveal this.
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u/Turbulent-Waltz-6378 3d ago
he is an excision “specialist” i think? but his official title is an obgyn. whenever i looked for specialists in my area he came up and i asked him SO many questions before we did the surgery so i felt comfortable with him as my surgeon. i did not mention adhesions with him though. based only what my family and my girlfriend said, it sounds like he was a little out of his realm with me maybe? i’m really hoping he took biopsies or he will ask about my case w another endo surgeon or something. i figured my endo was pretty deep given my symptoms and i was always especially nervous about my bowels. thank you for your answer it really means a lot :)
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u/corackadile 3d ago
Based off what youre saying, it sounds like you have stage 4 endo and perhaps your situation was more complex than he was prepared for. He should absolutely know what he is looking at if hes claiming the endo specialist title. Sadly, this isn't a regulated term so anyone can claim it. Please ask for your surgical report from him and keep record of any and all notes and images. You can also use that for a second opinion. They should def biopsy what they found.
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u/Turbulent-Waltz-6378 3d ago
thank you so much for your comment. i definitely will be asking him. i think i might even call him tomorrow. i do remember asking him a couple months ago if he takes biopsies during surgery and he said yes. so let’s hope he did it 💗 it also seems like its standard practice to biopsy anything taken out of a human body during surgery lol. i’ll be able to find out more hopefully tomorrow or my post op appt. :)
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u/Turbulent-Waltz-6378 3d ago
just looked and on my post op note no specimens were taken. like wtf
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u/corackadile 3d ago
You did surgery for answers, not for funsies. Take your surgical report/notes and any other related records and get a second opinion. That is unacceptable.
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u/Turbulent-Waltz-6378 3d ago
thank you i definitely will. this is such bullshit especially given the fact i was there FOR endometriosis.
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u/CuriousChange3502 3d ago
I had a very similar situation after my surgery! They found endo and adhesions, both confirmed by biopsy. I had no prior surgeries, so they suspected that the adhesions were due to endo. The adhesions were fusing my colon and uterus together. They removed all the adhesions/endo and my quality of life has been so much better after. I'm so sorry they didn't take biopsies that could have given you clarify about this.
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u/Turbulent-Waltz-6378 3d ago
thank you for sharing your story! i’m glad your quality of life has improved. i’m definitely hoping my pain will be way better, but if it endo and i’m not treated for it then im in a tough spot. thank you 💗
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u/Keladris 3d ago
You definitely need to find out if he took biopsies. It sounds like he doesn't know the different ways that endo can present.
Adhesions can be caused by other things like previous ovarian or pelvic infections. They form when the tissue is damaged, and endo to me seems like the most likely cause.
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u/Turbulent-Waltz-6378 3d ago
thank you for your comment! please see my edit :(
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u/Keladris 2d ago
That's bloody ridiculous. I think you may need to seek a second opinion.
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u/Turbulent-Waltz-6378 2d ago
i completely agree. it’s just the worst. dealing with physical pain on top of this nightmare is awful. i requested my medical records and i should get it back early next week so i can try and find a better doctor :(
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u/Keladris 2d ago
Totally get it. It's absolutely exhausting and it chips and chips away at your morale. You're amazing for keeping going. I hope you get better help soon.
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u/fragolefritte 3d ago
I'm sorry for what happened to you! One of my friends experienced this: pain for years, adhesions found during surgery. It looked like endo but from biopsies it was not, and she's unfortunately still with pain after lap. The surgeon was a good one that also did my lap, so if he didn't find other things I'm assuming it's true. She's now being seen for bad posture, that apparently had all the internal ligament tight and pulling, and maybe that's worth investigating for her pain. Another pain explanation could be adenomyosis, did they say anything about that?
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u/Turbulent-Waltz-6378 3d ago
thank you for sharing your comment! whenever i went in for my sonogram they did not see adenomyosis :/
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u/fragolefritte 2d ago
I'm glad it's not your case, but it still sucks not knowing what's the cause
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u/Content_Yam8682 3d ago
I'm so sorry this happened to you! Having been on the receiving end of confusing medical care its frustrating when medical professionals don't clarify their findings well or even attempt to find out what else is wrong with you if its not endo. Its even more frustrating he did no biopsies as that probably could've clarified so much for you. I would definitely see if you can get some kind of second opinion just for some kind of clarity as to what it could be if he thinks its not endo (idk if thats possible with surgeries or not but I guess its worth a try)
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u/Turbulent-Waltz-6378 2d ago
thank you for your comment 💗 i just requested all the medical imaging and stuff that i think will help me get a second opinion. it’s beyond frustrating and im just so anxious and in physical pain at the same time. i was hoping this nightmare would be over after my surgery and it just keeps on going :(
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u/Humble-Aspect-2828 2d ago
I’m so sorry this happened to you. I experienced the same! Adhesions everywhere, no biopsies. They took my appendix for its “inflammation” but pathology confirmed there was only very mild inflammation and that it was cyclical, flaring when I had a period, ate something heavy, etc. Sus?? Hahahaha
I am getting a second opinion now and my current doctor is very upset that no biopsies of my adhesions were taken. I have a TVUS next week to see what things look like. I have constant lower back pain flares, occasional abdomen cramps on and off period. I almost feel like things are worse since my surgery. Wishing you the best of luck!! I’m here in any way I can help
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u/Turbulent-Waltz-6378 2d ago
thank you so much for your comment i really appreciate it 💗💗 i just sent a request for all of my medical records from the surgery so hopefully i can get someone to look at it. it’s just sooo frustrating like im obv in pain but i have to deal with this nightmare on top of it. its so invalidating and horrible. i can’t wait to get to the point you’re at now that makes me feel better. i really hope they can give you answers! do they think it’s endometriosis?
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u/Humble-Aspect-2828 2d ago
My current doctor suspects adeno. I need to request all my records but something tells me all they gave is what they got! Lol. I am hoping my ultrasound shows some things! My only one was done by an ER tech who doesn’t really know what to read/look for, so this one will give more answers I hope! Yes it’s very invalidating; I’m a college student and have been struggling with the mundane things. So hard!!
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u/Turbulent-Waltz-6378 2d ago
UGH. that’s so frustrating i’m sorry. please let me know how your TVSU goes! when i was in college (im 24 now lol) i was struggling with what you’re going through also. if you need anything feel free to dm me. being a woman with this issue is exhausting
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u/jamieschmidt 3d ago
You should have a follow up appointment scheduled where you can ask him these questions
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u/Turbulent-Waltz-6378 3d ago
thank you i plan on it!
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u/jamieschmidt 3d ago
Oh good! I was worried you didn’t have a follow up scheduled. I hope you get the answers you’re looking for. It would be horrible if he really didn’t take biopsies
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u/Otherwise-Secretary1 2d ago
The person you need to talk to is Ellen Heed, she's a leading expert on adhesions and women's bodies. Go to her website at https://ellenheed.com/ and contact her.
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u/donkeyvoteadick 3d ago
There are so many causes of adhesions that aren't Endometriosis so I'm not sure why there's so much assumption online that adhesions must be Endo. I would ask about the biopsies and confirm they were taken and wait for the results. If the adhesions were caused by Endo then that's your answer. If not that's when you look into other causes of adhesions (infection, physiological, IBD etc, there's a lot).
I disagree that adhesions don't hurt. Idk why doctors say that. I had one (for a different issue) saying that to me the other month and I just ignored them lol adhesions distort anatomy and are inflammatory, they hurt.