got my surgery notes, need help understanding them please

[velvetonion]

So i had my first lap just over two weeks ago after finding endometrioma on my ovary on an mri.

after the surgery my surgeon/consultant came to see me to tell me what he found, i was still high and he only said a few unclear sentences before leaving a minute later so i was extremely confused, i now finally got the letter that says what they found but it doesn't make a lot of sense to me and its making me spiral because i still have so many questions as it still isnt clear to me.

I'll give important context and then include exactly what this letter says and if anyone can help id really appreciate it, i know no one will be a doctor or can give me any medical advice, thats not hwat im looking for!! im just hoping someone with more endo experience than me can help if they went through something similar with their lap findings, or someone who could help reassure me because ill be honest im shitting myself ahahha.

so like i said after my surgery my doctor came in to talk to me, he was acting weird i cant explain it, i was still loopy and tried to ask questions but he didnt really respond, maybe he was just in a massive rush but it was still odd. when i woke up in theatre after surgery i asked all the staff in the room if they found endometriosis, everyone said yes, the nurses, the doctors, everyone said yes they did. but my surgeon when he came to talk to me he said yes but only in so many words, he said they didnt find the cyst on my ovary that was there in the mri and he said they found a lot of old scar tissue, thats basically all he said as well as asking me if was still having pain. the way he said all of this was weird it was like he sounded suspicious or something it was so strange. obviously i wasnt fully myself but it just was a very weird short conversation and after that he just left saying he'll see me in two months. after that for the last two weeks ive felt so worried and off, not knowing what exactly they found and what they did in there, it was scary and i have felt so uneasy and out of the loop of my own health i dont know how to explain it, its been awful.

now ive got the letter and i just started crying when i read it because i dont understand it, i would be okay knowing ill see my consultant soon, but my appointment is in october which is so long away to sit in all of this fear and uncertainty so im really hoping someone can help me even if its just some reassurance im scared.

-the letter reads- (ive taken my surname out)

Miss x was taken to the main Theatre for laparoscopy and treatment of endometriosis. Through a three port procedure with an entry pressure down to 2, up to 25, down to 15 obtained a good view; 360° views were obtained, which was clear. There is no evidence of upper abdominal endometriosis. There is no active endometriosis in the pelvis, but there is evidence of adenomyosis of the uterus. There is thickening and scarring in the both uterosacral ligament, this has been ablated using diathermy. There was some fluid in the abdomen, this has been aspirated. There is evidence of endometrioma and both ovaries are freely mobile. The gas was released, the ports were removed under vision, Vicryl Rapide was applied to the skin. I am expecting her to be discharged later on and I will see her in the clinic in two months.

-end-

does 'there is no ACTIVE endometriosis in the pelvis' maybe mean that it was active at some point? as he said to me he found a lot of scar tissue that had been there a long time, i remember him saying exactly that because he said it in an emphasising way or something and it confused me. Again, im not asking for medical advice or anything just maybe some insight into what this all means, im so scared now thinking they found nothing?????? but everyone said to me that they did find it, and what does the fluid mean does anyone know?? im just a mess i dont know what this all means, i cant wait till october to find out more, i need something at least. im so confused and upset and hope that this doesnt mean i did it all for nothing, and that my pain isnt real and i actually dont have endometriosis. i saw the adeno part, so thats something i guess? but all of my symptoms have always been endo symptoms to a T, i have every single one. sorry for this big long spiraling message im just scared and dont know what has actually happened, hopefully someone can give me some advice <3 xxx

im happy to answer any questions at all if anyone needs more context or anything

[velvetonion]

also i’ll add that on the nhs app, under health conditions on my gp health record, along with my fibromyalgia diagnosis, it says

22 July 2024

Laparoscopic laser destruction of endometriosis

Significance: Significant

Status: Active

it doesn’t just say endo as a diagnosis though it says the surgery i had so it’s a bit confusing, i’m not really sure what to think of this either

[Lofty1589]

I would recommend requesting your surgery notes through a Subject Access Request - you can Google this and your hospital name and should have a page for you to do this. I find that letters from drs etc do not cover everything. The lap notes should give you some insight.

I would also be concerned that anything seen was ablated. It is likely that the pain will not reduce. You need Endo (be it “active” or not) to be excised

[velvetonion in reply to Lofty1589]

my surgeon said to me at the pre op appointment that it would be excision surgery, but if they found stuff that could just be ablated, then he would ablate, so i assume that’s why he only ablated, it’s frustrating to read so i just hope he did what was right for the situation :/ thank you for your advice especially with active or not needing excision, i will write that in my question list and get clarification! and i will absolutely start the process of requesting my full lap notes! hopefully i can figure it out 🩷

[Lofty1589 in reply to velvetonion]

I would be concerned ablation was used regardless as the root is still there. Is your surgeon BSGE accredited/an Endo specialist? From my understanding, involvement of the uterosacral ligaments makes it rectovaginal Endo and it should only be treated in a BSGE centre.

[ClaudiaGrace]

Hey,

I’m so sorry to hear you are feeling so upset and confused after your surgery. October is a long time to wait so I can understand you reaching out.

I obviously can’t give medical advice as you say but I can share my thoughts on what you’ve shared and my understanding of endo.

My understanding of endo is that it is an inflammatory disease that ‘flares up’ so I would imagine active lesions are those where the endo is growing and that no active lesions may mean the ones that had been present have burnt out. I would personally be seeing this as a positive as it sounds like it means your endo is currently not active in your pelvis. There are all kinds of factors that can reduce the likelihood of your endo flaring up such as diet and stress. These are all things you can take control of now to support your recovery.

I understand ando to be similar to endo especially in symptoms so it’s definitely still something that they found and treated that, this explains it well nhs.uk/conditions/adenomyosis/

My suggestion would be to write a list of questions that you would like to ask the consultant to take control of the situ a bit. I have found this very helpful in similar situations myself. Then if you had the surgery done by an endo centre you could call and ask to speak to the specialist nurse and see if she can answer any of them before hand too.

The other thing I would say is that surgery isn’t everything, you can’t cure endo, it’s about management of a life long condition and there’s loads of other lifestyle stuff you can do. I would personally be seeing the surgery as the less they needed to do in there the better, as that reduces risks of complications and scar tissue from surgery. Maybe look in to advice from nutritionists and physios who specialise in endo so you can find other ways to try and manage your symptoms until October, again in so you feel more control. Chloestevensphysio is a good page to follow on insta.

Hopefully some of this is helpful and sorry to not be able to give more clarity. Apologies if I’m saying anything you already know.

Take care,

Claudia

[velvetonion in reply to ClaudiaGrace]

the adeno bit is definitely good because at least that can explain some of my pain! i have all the symptoms for it but my symptoms have always been endometriosis all the way, especially with the mri, im also not sure on whether that’s a thing he’s saying i have now or it’s just ‘evidence’ of that, i’m not sure what makes it just evidence but that’s a question for my list

my surgery wasn’t at an endo centre unfortunately it was a private hospital in lancashire as the nhs referral sent me there as least waiting times

yeah i’m not massively stressed about what pain reduction i’ll have i don’t have high hopes, if it helps it helps, i just really REALLY want to know what he found, whether im diagnosed with endo or not (as i’ve been begging for someone to listen to my pain for nearly a decade now and i just want answers so so badly ) as if he says yes, i’ll settle down completely and know that my pain is real and i was right that something was wrong and finally can move on with an answer to start working hard on managing and easing symptoms, as you said like with an endo specialising nutritionalist etc etc, obviously i can start and have started doing SOME of that a while ago now, but i just need to know 🩷

thank you so much for your reply and advice claudia, and thank you for the instagram recommendation i appreciate all of it thank you 🩷🩷 xx

[ClaudiaGrace in reply to velvetonion]

No worries at all. It’s such a tough one and I don’t think you’ll be the only one feeling like this, it’s a long road and it’s very hard to get answers from anyone.

I had my first surgery with general gyne unfortunately too, it happens sometimes, not ideal but still, sounds like yours was at least an endo specialist at your private hospital!

Re the MRI I wouldn’t treat that as fact either unfortunately as I was told I had kissing ovaries from my nhs MRI then paid for specialist ultrasound and he clearly showed me my ovaries jumping up and down therefore not stuck.

Hope you get the answers you’re looking for when you get to speak to the surgeon. In my experience certainty is something that is so hard to come by with endo so at least some certainty about what was done and what was found would be great!

Good luck and take care of yourself in the meantime

[Ova104]

what I don't get is there is no active endometrioma. The presence of endometrioma I was told indicates a more severe stage of endometriosis. The letter reads there is evidence of endometrioma. You need to request the full op results not just doctor notes - think someone said that already. I got my scan notes and they didn't resemble one of the consultants notes entirely. His notes were sketchy but no longer with him now. Got another opinion. I think in all of this listen to your gut too. There is tons you can do for endo through diet and lifestyle I am doing that at moment and I found some of Dr Conor Kerley's work hugely helpful and supplements for hormone balance.

podcasts.apple.com/ie/podca...

What was the timeframe between being told you had an endometrioma on mri and then it not being there surgery? The letter reads there is evidence of endometrioma. Not surprised you are confused. So he must be defining active or inactive endo. So there are active lesions or inactive lesions from endo...how do they distinguish this - a question for them. I was told endo can become inactive after menopause or it can go dormant... mine I think was being driven by high estrogen originally..

Don't panic get the notes not just the letter. Your own doctor can request them, this is what I do and then I get them off my doctor. The team here are very good. I had scan recently and I sent up a call here with support. Just reassured me. And people on here have been through so much, so it is always good to talk to people on the ground living the same things. I found I gained huge knowledge talking to the ovarian cancer specialist doing my scan. She was so nice and hugely helpful.

More importantly what is your pain level like now? I think first steps don't panic it really doesn't help endo. One step at a time. Get radiology results and op notes.

Sorry for my disjointed response, I type faster than I think.

I think next steps:

- Get notes

- Talking to people on here- they are huge support for me. Love you all btw

- Set up call with support before Oct they are open 9-5pm

- Post gist of notes when you get them

- Make list of questions

- Look into nutritional changes and stress mgmt to stop flare ups. For me bread didn't help bloating. I can eat sourdough but other bread kills me.

- Stand strong. You will get your questions answered. I was totally panicked too but went for 3 opinions there was no getting rid of me... a boil on the butt of humanity I was. One oncology nurse said to me 'The consultant is a bit overwhelmed by your questions'. My reply 'should he be a surgeon if he is overwhelmed by a few simple questions and should he be doing surgery if he can't answer questions in relation to it' !! I never got those questions answered but I moved on. Onwards and upwards.

xxxx

[velvetonion in reply to Ova104]

first of all thank you so much for your long reply i really appreciate you taking the time

the mri was in december last year and the surgery was july just gone so like 6ish months in between, i did have horrific pain in about january (i was on the patch continuously which made me bleed every day for a year and a half straight but the pain was bearable for the most part) where i was screaming it was so bad so i don’t know if that might indicate something happened with the endometrioma i’ll definitely bring that up to my surgeon.

how do they distinguish between active and inactive is a great question i wouldn’t have thought of i don’t think thank you for that!!

for getting your notes through your doctor do you mean your gp? do you just ring reception and ask for them to request it from the hospital and then you book a gp appt when they receive them?

as for pain, i've had one period in between my surgery on the 22nd july and it was pretty average for me i’ve had worse pain and i’ve had pain not as bad, it wasn’t as heavy all the way through or as long, but only by a little, it did make all my surgery pains come back and they hurt bad, i was about a week post op and the pain was really going away but the period made it all come back so can’t say much about my pain now, and i’ve had time off work which can cause flare ups for me so i don’t really know yet.

when you say set up a call with support before october do you mean ring my hospital or something? sorry im not really familiar with that 🩷

with your multiple opinions, did you send the full lap notes to different doctors or paid for appts privately and asked their opinions, or waited on nhs? i’m not really sure what the process is with getting more opinions

lastly, i’ll make a huge list of questions and will absolutely post on here for more advice as i get more information, thank you SO MUCH for your reply and advice it’s so kind of you i appreciate all your words 🩷 everyone on here is so amazing i don’t know what id do without all of you 🩷🩷🩷 xx

[Ova104 in reply to velvetonion]

I didn't do anything you are very welcome. People have helped me hugely on this so I try to give back based on my own experience and what is happening for me at the moment.

I went ahead and requested the hospital reception where I attended to send on the notes to own GP. They do this under gdpr so I couldn't get them directly. I then got copies from my own GP. GP gave me printed copy.

I mean the site has support options with people volunteers who have experience of endo:

endometriosis-uk.org/helpline

The public system is too slow here in Ireland so I went privately for different opinions. It's far too long of a waitlist. I had health insurance so I used that to get refund on some of the consults. One consultant was not endo specialist and I didn't think he listened to my questions so I felt frustrated and moved on.

Start with the main steps but you shouldn't be in unmanageable pain as a gynae said on this morning on tv this morning. Pain needs to be managed and don't take no for an answer, your doctor can push for more urgent referral October is a long time away.

Having endo myself I would say you do have it. What were your bloods like hormone panel? This is very important.

xx

[endo_the_stigma]

The first thing I would be checking is whether your surgeon is a BSGE listen Endometriosis Specialist or just a general gynaecologist because they are VERY different and gynae's more often than not miss endometriosis in surgery. I have heard soooo many stories of people who have had multiple surgeries with a gynae and were told they found nothing, only to finally have surgery with an endo specialist and get diagnosed with stage 4 endo.

My next bit of advice would be to submit a 'Patient Access Request' to get your surgery notes and photos sent to you. I had my surgery in June and was unhappy with something that was done (ablation on my bowel without a bowel surgeon present) so in July I requested my records and three weeks later I was sent a 90 page PDF document with all my surgery notes and 5 pages of photographs from the operation. This has been so much more helpful for me to understand exactly what was found and done because surgeons can be very vague and in a rush to get you in and out as quickly as possible.

It sounds to me like you do have endometriosis but it has either been missed or inadequately removed.

Hope that all made sense and you find your answers soon xx

[velvetonion in reply to endo_the_stigma]

i don’t think my doctor or hospital was on the approved list, but he did say to me that he specialises in endometriosis so i’m not exactly sure. i’ve heard a lot of stories similar about them not finding it after multiple surgeries too but everyone in the room told me they found it, and my surgeon did sort of say yes when i asked if they found it, i think that’s why im so stressed because i don’t actually have a definitive yes or no. that document you were sent sounds amazing! how did you go about getting that sent to you? can i just ring the hospital number and ask? thanks so much for your reply and advice i really appreciate it xx

[endo_the_stigma in reply to velvetonion]

No problem Its different for each hospital so I would maybe google 'subject access request for *hospital name*' and you should be able to find the information and contact details xx