I had an MRI scan and laparoscopy last November. The MRI showed deep nodularity accross both sides of the peritoneum and cysts in the uterus walls. During laparoscopy they say they only saw a couple of small patches of superficial endometriosis and removed them. I was discharged.
I am now with an endometriosis specialist team and only had a phone call so far. At the time I wasn’t sure what I’d had done in my November laparoscopy. Either way they want me to have another MRI. They said they suspect adenomyosis and also deep infiltrating endometriosis.
Q. Could deep endometriosis have been missed during my laparoscopy?
I’ve been really poorly after stopping the mini pill in the last few weeks. If it’s not endo causing it what is? Feel lost again. Anybody in the know about this, your experience would be most appreciated xx
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I'm not 100% sure but i think it can be missed yes! I would be interested to see if anyone has any research or sources we could read about this, but yes I do believe it can be missed. Xxx
Sorry you are feeling poorly. Deep endo being missed at laporoscopy is an area I have been trying to find peer reviewed research papers on for the past few weeks!! As per most things endo seem to be gaps in research but will update again if find anything else ( long of the short is endo detected stage 3-4 and adhesions were removed. Told dont think "Deep infiltrating " but I have urinary, fecal and nerve signs to imply deep infiltrative endo).
The surgeon should be looking for external appearance of endometriosis lesions throughout the abdominal organs ( repro tract, recto vaginal, bladder etc).
Its a bit of a minefield in terms of what may be missed in what I have read the journals seem to focus more on mri as a modality compared to laporoscopic lesions ( more so will mri miss stuff). My surgeon implied the cul de sac looked clear ( but the sigmoid colon was attached to the uterus/ovary) thus couldn't be infiltrative however the same as you I am having an mri to look for deep lesions.
One resource written by radiologists implies possible to miss D.I.E of the cul de sac
"Presence of deep infiltrating endometriosis in the cul-de-sac can be easily overlooked at laparoscopy due to the creation of a false peritoneal floor by endometriosis in the pouch of Douglas, partly caused by anterior rectal wall adhesions.
This phenomenon gives an erroneous impression of extraperitoneal orgin ". I asked the surgeon if he could be 100% certain based on external appearance. It was implied improbable to be d.i.e but an mri was arranged 🤔
When you had the laporoscopy did they say the cul de sac was clear, no recto vaginal involvement? Bladder walls looked well? Any nodules/ adhesions elsewhere etc? When was the original mri any lesions detected other then of the repro tract? Any recto vaginal is deep endo.
Another area is adenomyosis this is where the endo is actually within the muscle of the womb. My surgeon said possibly have since the womb was thick but bear in mind just based on external appearance the gold standard used to be biopsy ( historically at hysterectomy but advances in imaging lesions meant it can now be found via mri-
Did they say uterine cysts/ nodules or thickening? Did they raise that this could be adenomyosis?
I am very glad you are with an endo centre. I think repeat mri as they are doing sounds very logical especially since it was November can try and see if any signs of deeper endometriosis since then.
When I had the surgery they barely told me anything. I’ve actually had to write to them in order to find out anything at all. The surgical findings she now describes I.e. a tiny bit of endo in one place, doesn’t really correlate with the MRI results (nodularity of both pelvic side walls with a 3cm bit over the left ovary). She doesn’t mention anything about the pouch of Douglas etc.
The new endo specialist centre consultant has looked at the same scan and says he suspects deep Infiltrating endo.
Re Adenomyosis, the same MRI showed cysts in the uterus wall. The consultant last year fobbed it off, but the consultant at the Endo specialist centre said he thinks it’s Adenomyosis.
Any research you find would be appreciated as I’ve drawn a blank myself. Xx
I am so sorry, it sounds very frustrating being told different things and awful if lesions were missed prior 😕 are you able to ask very specific questions to the endo centre consultant?
I'd ask if suspected deep infiltrative lesions on this mri where are they specifically ( is it as you've mentioned above or any other suspicious areas) ? Are they happy the mri at the time had no rectovaginal involvement etc? Tbf they will repeat the mri again to ensure nothings changed since then either way which is reassuring. I think I'd just blatantly ask them how at lap this wasn't seen, the endo specialist hopefully will have your lap report already.
Sorry I can't find any science papers in this area except links above which I have just added above ( one is mri specialists comparing their images to Lap findings. read the part saying "cul de sac" / implies can miss d.i.e. here at surgery the other is a paper re adenomyosis) . But I am sure the endo consultant will be able to help shed some light.
I’ll be seeing the new guy in October with the results of the second MRI. He has seen the previous surgical report ( as have I ) and it is about 2 lines long with no specifics. He couldn’t tell what they had done or seen during surgery either. Hence the new MRI.
No idea what that new scan will show and the competence of my previous surgery vence all my worries about the future. Xx
Gosh I am so sorry. That's awful. I hope the new consultant/ mri get the answers.
Yes I understand it is scary, I have the results of mine back the 13th of sepetember and dread to think of what they may find. I just hope it can help me take the next steps to feel better.
Oh there was another paper (below) that just says the same about deep endo again can be missed via lap ( rectovaginal septum, pelvic muscles, sciatic nerve) but appreciate not everyone wants to read long science papers.
I think in your case at least you are under the care of an endo specialist now who will be far better equipped for diagnosis and management.
This paper is really good actually thank you. I’ll defo keep a copy of it.
Im happy to read long research papers. I had to do it for my microbiology and genetics degree. What’s frustrating and scaring me is the total lack of information and communication I’ve had. I’ve also just generally been treated like rubbish by my last consultant.
The new guy has recommended I try the merina coil for the adenomyosis and we’ll discuss other options when we have the MRI results. I just hope they don’t come back magically clear and I’m discarded. I’m terrified of that happening. It’s keeping me awake at night tbh.
Fingers crossed you get constructive results from yours 🤞🏼🤞🏼🤞🏼And a treatment plan that helps.
Ah a fellow scientist! glad you find it useful. Another good general resource (you may have already ) was shared with me by another user. It's good because it's based on studies into areas rather then just anecdotal evidence and has many areas regarding endo covered eshre.eu/Guidelines-and-Leg... I always have a quick skim read of this first if I have any questions and if not end up in pubmed looking for papers 😅
Yes I am also very angry on your behalf of the lack of comminication and dismissive nature. I've had to myself raise a complaint due to communication issues and being told a ct was fine ( I read my report it had an ovarian cyst and a liver nodule noone mentioned!). I hate having to complain and usually feel like it's screaming into a void but hope by doing so it maybe gets better for other women.
Yes I know what you mean I have anxiety too that they will say the mri is clear! But I will just have to wait and see for now, its a tough one as obviously don't want deep endo but would also feel like a crazy person if nothing! I have sciatic and puendal signs on top of bowel/ bladder and am already aware unless a big lesion nerve endo can be missed anyway.
Easier said then done but I think we should trust our bodies, know what is not normal and shouldn't let our experiences of dismissal make us feel like we are making it up. I am sorry you are going through this and hopefully you will get the answers you need.
Thanks for the link, I’ve not seen that one before either. X
The previous consultant was none communicative and very cold, even when she thought my MRI results looked like terminal cancer and they were rushing me to surgery on the cancer pathway. To her, endo and the impact Gynae issues are having on my life are inconsequential. Im happy to be with another team now. If my MRI doesn’t come back clear, it will give me the confidence to complain about her. I doubt I’ll be the first.
Obviously I’d rather just be well, but I’m very much not, so I need a clear route and support out of this situation asap. The waiting lists and not knowing are really hard to deal with. Hopefully the answers I need will come.
Oh was meant to say if still painful off the pill I'd keep harassing my gp in the mean time try and get a good pain management on board while waiting. I asked for a gp with an interest in women's health after a couple of misguided ones. She is really good and has been helping with pain/ chasing referals etc in the mean time x
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