Not happy with surgery results. Please help .

[Ellie386]

I wonder if someone can give me some advice. I am currently in hospital having had my second surgery this morning to remove endometriosis, this time predominantly around my bowel. I have waited a year for this op and it was deemed necessary after having an MRI which showed a 'plaque surrounding the bowels and stranding connecting to my uterus, with a titled uterus as a result of the fusing'. The obvious ongoing horrendous pain didn't quite convince them 🙄. Anyway my op was over fairly quickly and the surgeon came to speak to me (when I was completely out of it) and said it was a small surgery that only involved removing 2 endo nodules connected to chocolate cysts and some scar tissue from previous op. I questioned this as results of the mri a year earlier showed extensive endo and stranding but was told my pelvis looked clear other than the nodules...? How can this be? I dont know what to believe and I cant have waited a year to go home and be subject to the same pain. What do you guys think? Has anyone else been in this sort of situation? Thanks in advance. Xx

[Christin_a]

Hello Ellie

Have you been on anything to try and help with symptoms at all? If you aren't confident in the results you can ask the hospital for your records which should include images from surgery. I did this as although surgery did make my daily pain go away my flare ups and periods were worse and I was on alot stronger pain meds. So I did it to settle a niggling in my mind of what of they missed it or only checked a couple of places etc.

[Ellie386 in reply to Christin_a]

Thank you Christina I think I will. I just dont get how a scan a year ago showed extensive endo all over my bowels and in surgery it was largely clear??? Unless I am miraculously breaking it down. I have had it pretty much since I started my periods. the only thing I have done differently in the last year is quit the pill (I was tri-cycling for 18 years) which was mentally the most horrific thing I've ever done and will never go back on it. I have also started taking CBD oil religiously which helps with anxiety but I haven't noticed it improve the pain... x

[Christin_a in reply to Ellie386]

Well it could be a few things. I once went for a scan and they said that their notes said I had had a cysts of my ovary the last time I had so they wanted to measure it. I told them I'd never been told I had a cysts so had no idea what she was talking about. My old scan clearly didn't show a cyst but a note was made incorrectly against my file.

I think the only way your going to be at ease with what's been told is to get your records and find out. I really hope its not like my situation where they messed up the notes with someone else but I think that'll be the clearest way for you to wrap your head around it. And see if you agree with the diagnosis they gave or if you think they missed something and need a second opinion.

[Ellie386 in reply to Christin_a]

Thank you really good advice. I think you are right because I just feel so odd about the whole thing. Like I should be happy if its better than anticipated but you know how hard it is to fight to get something legitimate (on paper) that's shows it's not all in your head. I've asked for the surgeon to revisit the ward tomorrow and will ask. Thank you really appreciate it.

[_EndoWarrior_ in reply to Ellie386]

The pill basically masks Endometriosis pain and regulates bleeding for some.

The same happened to me when i stopped it ( I had to) due to a blood clot.

I also had a pelvic mri which showed the extent of my Deep Infiltrating Endometriosis (Stage4). Not all radiologists are experienced in recognising all signs of Endometriosis especially D.I.E. which I learnt reading the information files on this group site. I highly recommend it as it empowered me to make the right decision for me and helped me find the Nook Specialist nearest to me.

I must emphasise that it’s an Education Group not a support group. You do have to answer 3 security questions before being able to join and you have to wait a week before you can comment or like any posts.

Goodluck.

facebook.com/groups/4181369...

[lap1]

I don’t think MRI and ultrasound shows endometriosis. It sometimes shows Adenomyosis which is when the Endo implant is more than 5 mm thick: in which case it would be called adenomyosis. The stranding you mention is probably the scar tissue ( adhesions) which were removed. MRI does show cysts.

[StefaniaJW]

[This post has been edited in line with Endometriosis UK's code of conduct]

It sounds like your surgeon was not skilled at all and not an endometriosis specialist clearly. Do you have any pictures from the laparoscopy? The fact that the laparoscopy was brief is a BIG RED FLAG. The fact that the MRI showed more than what they found proves they/he was completely unable to recognize the lesions of even that the uterus is not supposed to be attached to the bowel.

I am utterly shocked you waited a year for a surgeon because that means he has a long waiting list

I suggest you immediately book an appointment with a REAL excision surgeon, with excellent training, lots of experience and especially who is able to tackle all cases.

[pashawillis]

Chech for more info on Nancy Nook endometriosis educational Facebook book page.. Put in serch bar all your questions.. There is a list of specially trained surgeons who are changing ladies life's.