Endometriosis diagnoses

[Lauralovesevie18]

Had my laparoscopy 2 days ago. Had endo removed from uterus, ovaries, uterosacral ligaments , UV FOLDS , but it states endo was seen in POD Adhered but not treated what does this mean? I was told on MRI that had a nodule near bowel so could this be what hasn't been removed?

[jjeemm]

Hi there

Hope you're feeling okay after your lap and taking things easy!

Sorry to hear you've had to have so many adhesions removed...I had my first lap last month and was told that, like you, I have endo pretty much everywhere. Because my consultant found that my pouch of Douglas was 'obscured', my cervix is stuck to my sigmoid colon and I have a 3cm nodule in POD I was told that for my next surgery I'd need both a gynaecologist and a colo-rectal surgeon working together to remove everything. I'm just wondering if you only had a gynaecologist who removed your endo? I've read that gynaecologists won't go near the bowel area because they don't have the necessary expertise.

If I were you, when you're feeling up to it, I'd phone your hospital and ask why your endo wasn't completely treated and will this mean that you'll need further surgery? By the way, are you being treated at an accredited Endometriosis Centre?bsge.org.uk/centre/

I do hope you have a pain-free recovery and will be feeling better very soon.

Sending all my best wishes

[Lauralovesevie18 in reply to jjeemm]

Hi yes I was told that because the gynaecologist was just a consultant and not a specialist that's why she didn't touch the area as she hasn't got the expertise.

Feeling so sick okay and all my GI symptoms are there in due my period in two days so it's all flaring up.

She just said would need a follow up in 4 months to fertile more treatment options I'm hoping this means the removal of the endo from this area . As the bowel is the main problem for me.

[this post has been edited to comply with our code of conduct]

[jjeemm in reply to Lauralovesevie18]

I'm really surprised that given you have the same problems as me - endo on the bowel - you weren't told that you would have both a gynaecologist and colo-rectal surgeon working together to remove the endo from the right area. Why not treat all the problems in one operation? I'm so sorry you're suffering at the moment - I had the same thing as you, a period following the surgery and I felt really terrible. I really do feel for you. Please keep on top of your pain medication and try and take it easy. The next few days will be hard, but hang on in there - you'll start to feel much better soon once the period is out of the way.

Sending hugs and wishing you a really speedy recovery!!

[this post has been edited to comply with our code of conduct]

[Lauralovesevie18 in reply to jjeemm]

Did you have the one op straight away then? I was told that I needed a diagnostic lap as first step by any consultant and then if bowel is involved would need a second procedure with a specialist present.

I just don't see why it couldn't all be done at once but apparently that have to hit targets.

[this post has been edited to comply with our code of conduct]

[Hidden in reply to Lauralovesevie18]

Normal Gyne are not supposed to touch your endo, especially if it is extensive as their procedure might make your endo worse - at least that’s my understanding. I would STRONGLY demand to be referred to a BSGE centre (google the one near you and find a excision specialist), you need to be followed by an expert team. I think there’s even a list of gyne to shame when they take these kind of procedures in their own hands when they know full well they shouldn’t. My understanding is that as soon as she opened you up and saw your endo that needed excision, she should have closed you up and refer you IMMEDIATELY!

Your body, your rules. Don’t let a non expert touch your insides!

Good luck 💪💪💪💪

[jjeemm]

Hi

No, I had a diagnostic laparoscopy first - the only thing the consultant removed was an endocervical polyp. On the letter that was sent afterwards I was told where the endo had been found - pretty much everywhere - and the next step was to have an MRI scan done and follow-up appointments with gynaecologist and colo-rectal surgeons to discuss the next round of surgery.

I'd love to discuss how my surgery went and who I saw with you...but I'm not sure how frank I can be on this forum!!! Do you have a private email address I can write to so that I'm not breaking any rules?

[Lauralovesevie18]

Yes it's [e-mail] would love to hear any information you have as I'm going through the same at the same hospital .

[Lauralovesevie18]

Yes my email is [e-mail] would love to hear your journey as I'm going through exactly the same as you

[jjeemm]

Great - many thanks! I'm just making some dinner but will get back to you as soon as I'm done!

[Lauralovesevie18]

Thank you

[Lauralovesevie18]

Well this is the thing. I've previously had a MRI done showing we're all the endo adhesions are and this is typically quite rare to see on a scan.

Anyhow they still sent me for a diagnostic but with a registra but what could I do . I'm in extreme pain , it's ruining my life and I've got no social life because of this . I didn't have much choice.

It is a BSGE centre but the man who I wanted to do it basically stated he cannot complete diagnostics because of targets at the hospital.

I had it done was told we're all the endo was and told some was not treated due to needing expertise. Now I've been left with no treatment and another 4 month wait just for an app. It's ludicrous. I've explained I've suffered for 5 years with this frequent A&E attendances and inpatient stats due to being misdiagnosed and being diagnosed with everything else except endo. I'm getting married in 7 months time and I don't even think il make it down the aisle .

I could go private but that would completely zap our savings. Just don't feel like I can move on from this. It's like a curse .