Endometriosis biopsy : Finally received a... - Endometriosis UK

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Endometriosis biopsy

Lunaloo123 profile image
5 Replies

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?

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Lunaloo123 profile image
Lunaloo123
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5 Replies
Lofty1589 profile image
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 profile image
Lunaloo123 in reply toLofty1589

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 profile image
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 profile image
Lunaloo123 in reply toBoxerdo

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 profile image
Boxerdo in reply toLunaloo123

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

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