lump found in august

[Emylou1]

My daughter had a diagnostic lap in august and was told there wasn't any endo but she might have adenomyosis. My daughter had noticed a peri anal lump which didn't mention at the time because she thought it was a pile. She has been managing her menstrual symptoms with desogestrel.

she has since been referred to colorectal and had a mri without any bowel prep or contrast and they diagnosed her with a fistula. She went to surgery last week with a different surgeon who after going in said it wasn't a fistula but there is now a 2cm by 2cm lump, he didn't take any biopsies when she was under GA.

The surgeon said he wanted to get a Gastro opinion and has now called to say she needs another mri with contrast.

Could there be any chance this is a deep endometriosis nodule if superficial endo wasn't seen?

Thank you in advance.

[DogDutch]

I will get back to you on what happens from mine. It is good to see what others have been through to see if it can be helpful for similar situations.

[Lily1986]

this is very interesting as I have very severe deep infiltrating endometriosis heavily involving the bowel.

I too have a lump in the rectal area which bleeds and hurts cyclicly. It’s of a similar size to the one you mention too.

I don’t know why it’s taken me so long to realise that it highly likely isn’t a pile but is in fact very likely endometriosis nodule.

Unfortunately I haven’t been very lucky with my latest colorectal consultant he wasn’t interested in helping me, or any one else with endometriosis it would seem.

So I’m planning to be referred to my old colorectal specialist who was lovely at a different hospital. I also am awaiting an appointment with gastro consultant but only recently been referred.

I’ve decided to wait until I speak to endo specialist in January and see what he says about it.

MRI’s sometimes pick things up but very often miss things unfortunately.

Sorry I’m rambling on here…just to say yes I’d agree with you that it could very well be deep infiltrating endometriosis.

I’m so sorry your daughter is going through this awful journey with this debilitating disease. I do hope they will remove the lump and send it to pathology for testing.

If you ever need to know anything about deep endometriosis please message me anytime I’m more than happy to help. ❤️