Endometriosis biopsy

[Lunaloo123]

Finally received a call from my consultant’s secretary… apparently I shouldn’t still be in pain (knew it!) so I now have an appointment to see the consultant again in January.

I did receive a letter from the consultant with the biopsy results of the endo that they took out and I am so confused by the wording…

”the biopsy has come back as normal. This is not unusual that endometriosis is not always picked up in the sample, this does not mean that you do not have endometriosis”

When I had the surgery, the Doctor told me they took out a lot of endo and now the bit they have tested doesn’t have endometriosis in it? Am I going mad?

[Lofty1589]

When I had Endo excision in Feb, 2 samples were taken of Endo from my sidewalls (one each side) After biopsy, they came back as no Endo found. However, my consultant explained it to me that it had become fibrotic tissue so essentially the Endo had been there for so long and got so bad, it essentially became scarring.

Also, just because a biopsy didn’t see it, doesn’t mean you don’t have it. Just means it wasn’t in that sample

[Lunaloo123 in reply to Lofty1589]

Thank you so much for explaining this! A friend of mine had a fibroid as well. I didn’t realise that it could all be connected.

I hope things are better with you.

Thanks again x

[Boxerdo]

exactly the same happened to me and i thought i was going insane! Had a diagnostic lap, confirmed endo, then 12 months later had excision surgery as in agony, consultant was unfortunately not the same person and was extremely dismissive said removed what looked like endo.... biopsy result was neg for endo!! I have had to fight with the consultants but have finally listened to me and showed them the NIICE guidelines which shows about you have endo despite the neg result biopsy...... Either way I have managed to get myself back on the lap waiting list for another excision!!

[Lunaloo123 in reply to Boxerdo]

It’s confusing and so frustrating that we have to almost prove our case!!

Such a horrid thing to have. I am so glad that they have listened to you now but keep being strong because unfortunately there always seems to be another sodding hurdle!

All the best x

[Boxerdo in reply to Lunaloo123]

it generally is dreadful and yeah im chasing every week to see whats going on. I had the coil fitted in my diag lap but worried they will say nothing there and the coil is stopping it growing or something like that. Im in 2 minds of having the coil removed prior to see if its masking endo symptoms x

[Boxerdo in reply to Lunaloo123]

I had my laparoscopy, 3 weeks ago now. Consultant said removed endo from a few places I can’t remember where but I’m sure left but said was difficult to see because of previous authors said he wasn’t 100% sure but removed what did not look like it should… so I’m just waiting on the histology results! Let’s see what happens

[Boxerdo]

Hiya I have received my biopsy results,

This is my 3rd lap after asking for it and pushing as didnt believe what they found in the last lap.

I am confused though, any help would be brilliant.

A. Biopsy fragment of fibroadipose tissue examined over four levels. There is no

atypia or malignancy.

B. Biopsy fragment of fibroadipose tissue examined over four levels. There is no

atypia or malignancy.

CONCLUSION:

Peritoneum- pouch of douglas - fibroadipose tissue only.

Peritoneum - left pelvic side wall - fibroadipose tissue only.

[Lunaloo123 in reply to Boxerdo]

Unfortunately, I have nooo idea what that means. I am so confused!

I hope you are booked in with the consultant to talk it through?

So have they taken out all the endo now?

I wish they would give us straight answers!!

[Boxerdo in reply to Lunaloo123]

I have absolutely no idea! franticly googling and some say endo tissue where as other say its not! I haven't got an appt yet been advised be around may/june time as a back log which means 3/4 months post surgery! And been advised wont be my consultant will be the specialist nurse!