Recent laparoscopy

[Gemmatripp]

Hi! I was diagnosed with endometriosis 14 years ago, I have had 2x ablation and 2x excision laps, with my last one being 8 weeks ago. The surgeon went through the op notes with me today and apparently I had 2 nodules in my pararectal space, one nodule higher up near my bladder. Apparently my bowel was stuck to my pelvic side wall with adhesions, lots of other adhesions sticking other organs together etc. He said it was stage 4, but I thought I had been told I had stage 2/3 before? What are nodules?! Anyone else had anything similar?!

[Marcia71]

Endo can easily get worse and go from stage 2/3 to 4.

Nodules are when it presents as a cluster of cells and effectively has formed a cyst of cells.

It sounds like you have rectovaginal endo and at stage 4 it should only be treated at a bsge clinic. Get him to refer you if you aren't already. He should have as soon as he realised it was stage 4.

I had adhesions sticking my Bowel to my pelvic wall and having had it realeased and adept gel put in to hopefully prevent the adhesions reforming I'm in so much less pain it's amazing. So hope this op did give you some relief too.

[Gemmatripp in reply to Marcia71]

Hi, my pain is improving each month. Did you go on hormonal treatment afterwards to stop your periods? Is rectovaginal endometriosis just a subsection of the disease?

[Marcia71 in reply to Gemmatripp]

Yes it is just a place you can have endo that gives it a different name.

I'd already had hysterectomy so am on hrt.

Still think bsge is your best option.

Good luck

[Hidden]

Nodules form when the endometriosis progresses and they are basically lumps of endometriosis tissue and can be quite large - I had 4 significant nodules and they were all 2-3cm in size. As has been said, this needs specialist surgery especially if the bowel is involved. Are you being seen at a bsge centre?

[Gemmatripp in reply to Hidden]

Hi, I did have it done by an endometriosis specialist, I had a nodule on a uterosacral ligament on my previous surgery so I did a bowel prep this time so he could excise the nodules. I was just wondering if nodules always meant stage 4?

[Hidden in reply to Gemmatripp]

I'm not 100% on this but I think it's the position of the nodules not just the size that makes it stage 4/severe.

If you look at this

england.nhs.uk/commissionin...

which describes the NHS guidelines for treating endo, disease on the uterosacral ligaments is rectovaginal endo which is always classed as severe.

[Gemmatripp in reply to Hidden]

Thank you so much for this! I feel like I've got a lot to learn!