After waiting 16 months for surgery I finally had my lap yesterday which didn’t find any endo - it was done with a specialist at a BSGE centre too.
I’m so confused as 16 months ago I had a MRI which showed thickened uterosacral ligaments, mild adhesions near right ovary and right ovary possibly stuck to bowel. I had 2 internal examinations last year where they felt nodular tissue in right ligaments. The assistant surgeon said before my op ‘if we’ve seen it in your scan then we’re going in to find and remove something’.
I am so confused!!!!! I had prostap last year for 7 months and then I stopped due to high blood pressure but my periods haven’t returned so I haven’t had a period in 13 months! Can it shrink the endo???
the only thing they found in surgery is ‘hemosiderin staining’ on left wall which they excised biopsy but ‘isn’t convincing for endometriosis’. The op report also states ‘bulky uterus’.
I had a lot of left sided groin pain last year and a popping/bubbling sensation around October - I’ve wondered if this could have been a cyst which burst and left the stain?!?
Who knows - I feel devastated that I don’t have an answer and kinda humiliated! I have been recently diagnosed with fibromyalgia so I’m going to have to assume all the pelvic, leg, back, groin pain, frequent urination and bowel movement is from that??
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That's very strange and frustrating you didn't get some clear answers. But in a way, it's good news, because who wants Endo, which comes back and damages your organs. I would definitely follow up with your GP. I've heard stories online of Endo dissolving through diet , but since you still have pain, it's hard to understand. If you've no periods then your hormones have changed, which may have shrunk the Endo as far as I understand. It's hard not to feel humiliated but you've no reason to- you have clear symptoms and a scan that pointed to endo. So it's not your fault they didn't find it! Maybe your GP could refer you to a psychology pain management clinic for fibromyalgia - they can teach techniques to lessen the impact of pain.
I've had Endo excision surgery and still have issues with my bowels and with pain , which I now think may be IBS . And I've lower back pain which I think is a separate issue. Perhaps further investigation of your kidneys are needed through your GP. You could always pay for a 2nd opinion consultation if you're still worried about endo, and give them your scan results and surgery notes if you request them. Good luck 🤞🏻
Sorry you didn’t get any answers. See what the biopsy comes back with, it’ll take a few weeks. Did they not find any adhesions at all? It is worth getting a copy of your medical notes, I like to see what they write in comparison with what they say. Ask specifically about your uterus and how bulky and is it adeno or if not why it’s bulky. If you don’t have a follow up you can request one.
Thank you. They didn’t come and speak to me but I was given post op discharge sheet that said no adhesions found. Good idea, I have requested a follow up and will ask about the bulky uterus. Family seem to think bulky uterus is because I have 2 children? But I have read it can be adeno.
So frustrating when they don’t see you after, they are doing that everywhere. My local put a message on the website that follow ups won’t be booked as standard but can be requested by the patient. It’s supposed to save time as not everyone wants a one apparently.
I like to see my notes including theatre notes so I can see how long it took. I’ve bought surgeons to task based on that in the past. 🤣
Yes definitely! My surgery took 40 mins apparently but doesn’t mention checking bladder etc (even though I have bladder symptoms) and didn’t check the diaphragm area which I thought was standard. I took a photo of the op notes and on the op notes it says bulky uterus but on the discharge sheet given to me it says normal uterus 🤯😖
Op notes can be awful, make sure you don’t lose that photo, that’s really good evidence.
My first op was about forty mins, he removed Endo from pelvic wall, pouch of Douglas but it was private so he didn’t have much time booked.
It’s definitely worth asking where they looked, don’t ask if they checked certain places more let them tell you. The surgeon I bought to task was a general one, I’d specifically asked him to check small bowel for adhesions he said he would. Turns out afterwards he only skim checked. Prior to that I made a complaint about Endo surgeon as he was supposed to have colorectal surgeon as he said he would but there wasn’t. We have t remember they aren’t gods these days, those times are long gone 😂
The assistant surgeon said to me that even if they find lots of endo they could only do the surgery for a certain amount of time because they had others booked in so I would need to come back for a second surgery if they found too much to complete in the time they had.
My family still believe doctors know all and it’s so frustrating!
That’s so silly, if they are going in they need to do all of it to prevent further surgery. No wonder they keep saying they have no money, extra half hour doing a surgery would cost less than a complete new one. That and surgery isn’t good for the patients.
If you had nodular fibrosis felt on your ligaments during a clinical exam and they were thickened on MRI then you have US ligament endo. This sort of deep nodular endo (rectovaginal) arises within the ligament and is only visible at a lap if it has grown through the peritoneal covering to form an obvious visible nodule. We are finding several BSGE surgeons who don’t seem to have an understanding of this and seem to think that if endo isn’t visible at a lap then it’s not there. But this type of endo is called retroperitoneal which is what MRI is for. Back and leg pain are typical.
The point of pre lap imaging for retroperitoneal disease is to know where to cut at the lap in order to find it. So the treatment is excision by locating the hidden areas that show on the MRI.
Would you mind sending me the name of the surgeon/centre by private message. It’s not allowed to name on here.
I’ve had a bubbling feeling, it’s mainly on my left side. Found out today I have a thickened uterosacral ligament 4mm and my left ovary looks very close to my uterus and apparently might be stuck which I’m wondering if that’s what is causing the bubbling feeling but he didn’t mention my ovary in the video call, I only saw it in the report after. He told me it’s not that bad and doesn’t overly want to do surgery.
Disappointed I have a lot of symptoms and he went from saying I’ll probably need surgery when hearing my symptoms to then today basically saying he probably won’t do surgery and telling me it’s “not that bad”
I’m sorry about that. I’ve heard that the extent of endo doesn’t necessarily correlate with the pain so someone can have extensive endo and not as much pain as someone with small / superficial endo. I think of you want surgery you should push for it xx
He recommended trying a different birth control so I’m trying the progesterone injection first but if that doesn’t work then I don’t know what to do cause he’s made it pretty obvious he wants to put off surgery. I get surgery is a risk but I don’t understand why he’s so unsure if it would help just cause there’s not much endometriosis when everyone online says mild endometriosis can cause severe symptoms, so then why would surgery for mild endometriosis be unlikely to help?
It’s a shame you didn’t get any answers from the lap, but potentially great news that you don’t have endo! I think I would ask for another MRI to see if there has been a change since the last one. This would tell you if your endo has in fact shrunk/gone or whether they just missed it during the lap and it’s still there. If it has gone they should look at you, your medication or your diet to see what has caused the endo to shrink!
Fingers crossed you get somewhere. I know how incredibly frustrating the constant waiting and lack of info can be x
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I hope you find some relief. But yeah everything I’ve heard is excision surgery is good standard x
Anyone had the same?
Removal or not of ovaries
CA125 level 89
help please :(
53, Bleeding on HRT and history of Endo
