Deep tissue endo diagnosis

[xRCx4x]

Hi,

I’ve recently had my 3rd lot of surgery to treat endo.

I’ve been told I have deep tissue endo which from what I’ve read isn’t great and is very rare and can cause serious complications. I’m only 25.

Any info or experience would be great please?

Thank you

[Sezvic]

Sorry to hear that. But can I ask where is the deep tissue endometriosis are?

[xRCx4x in reply to Sezvic]

Hey. Thanks for replying. I’m not sure, the surgeon assistant told me quite rushed as I was still a bit blurry from the anaesthetic. They had to cut deep tissue out of the womb is all I know. I have my follow up with the doctor in January.

[StefaniaJW]

Your third surgery was probably pointless just like the previous two, otherwise the deep-infiltrating endometriosis would have been removed during the first surgery.

Any surgery for endometriosis is pointless if conducted by a surgeon who lacks extensive experience and specialised training (while oftentimes surgeons claim to be specialised endometriosis surgeons even though they are unable to perform advanced excision surgery or are unable to recognize all endometriotic lesions). Was your surgeon a highly skilled excision surgeon with extentive experience and working with a team of surgeons (colo-rectal/bowel surgeon and urologist included? If the answer is no, you need to seek specialised help ASAP. Certain BSGE-certified surgeons and all Nancy Nook surgeons are trained and experienced enough to treat your case. PM me for names

[xRCx4x in reply to StefaniaJW]

Hey thanks for your reply. The first surgery was a laparotomy because I had a 12cm blood filled cyst that ruptured during surgery (I’m very lucky), that was NHS at a non BSGE hospital. Second surgery was under private, and was to burn away the fusion of my womb, bladder and bowel. The most recent one (week ago) was at a BSGE hospital and that’s where/when the deep tissue was discovered. Is deep tissue something that develops? Maybe they hadn’t found it before because it hadn’t developed into that yet?

Sorry if I sound stupid I’m just a bit all over the place at the moment.

Thank you

[StefaniaJW in reply to xRCx4x]

A cyst that ruptures doesn't necessarily require a laparotomy but given that general hospitals are unprepared to face such matters effectively, they go for the easy way in and leave you with a big scar.

The second surgery sounds like ablation surgery (where endo gets burnt away). Unfortunatepy ablation surgery is extremely counterproductive as endometriosis must not be burnt away but excised from the root (otherwise it grows back quickly).

During the third, they found what we call "deep-infiltrating endometriosis" (I'm guessing that's what you are referring to when you call it "deep tissue endometriosis") and diagnosed you with it but didn't remove it completely. Deep-infiltrating endometriosis is an ADVANCED CASE of endometriosis, where endo has GROWN EXTENSIVELY IN YOUR ABDOMINAL CAVITY AND OUTSIDE OF IT. Your stage of endometriosis is severe and endo has already grown extensively inside you. It needs to be excised ASAP. Don't worry about not understanding, clearly the surgeons you got surgery with are completely lacking the skills to treat you. If you want names of seriously capable surgeons who will remove endo from all your organs, nerves, muscles and tissues with single laparoscopy, PM me (after reading your surgery reports). I can also advise sources to help you educate yourself on the disease and the various types of surgeries