Where's my endo?!

[Blb21]

Hello, sorry for the long post!! does anyone have advice on how I can find this out?

I had a laparoscopy in 2014 aged 21, from which my consultant noted in my letter "ovaries and tubes appeared healthy, there was however, extensive presumptive endometriosis/salpingiosis". They didnt remove any endo (I am guessing they were not an actual specialist or have enough knowledge as it all seems a bit unprofessional!!), they have also never noted on my letters where the endometriosis was actually discovered, just that it was "extensive". I am concerned about where it is and how bad it is. I think I was told verbally about the areas but I had just come out of theatre and was too young/naive to realise I didn't have anything in writing.

Is anyone able to define "extensive endo" and what it could potentially mean?

I've gone to my gp 3 times to be referred back to my consultant as i have terrible bowel and abdominal symptoms, as well as a return of my periods (they stopped for 5 years due to birth control and am confused how they have randomly returned), they refused to refer me back for now and tell me I just have ibs.. which I don't believe is fully accurate.

How would I go about getting the operation notes and a more full explanation as surely this information must be somewhere?! I am in the UK, I cant seem to find any info on getting operation notes etc.

Thanks!

Becci

[Christin_a]

Hello

If you contact the PALs service at the hospital you had your operation at and ask for a copy of your surgery notes. They can tell you how to get these. This should say where it was found. Extensive endometriosis suggests to me that you should be seen by a bsge centre (they deal with more complex cases). If the gp you have seen won't do it and fobs you off try another go on the same surgery l.

You can also ask if there is a gp who has extra training in gynecology, I'm fortunate that my surgery does so that's who I got to refer me as she didn't fog me off with ibs. And said yes I think it's endo let's get it checked out.

If that's not an option say to your gp 'I have extensive endometriosis that was never removed and I now need this to be done, I need you to refer me as per the NHS NICE guidelines to a gynecologist who specialises in endometriosis'.

You can Google nice guidlines for endometriosis to see what the diagnosis and treatment pathways are do that you are familiar with it.

[Blb21 in reply to Christin_a]

Thank you for such fab info!! Submitted my access request so hopefully that will really help fingers crossed x

[Blb21]

Oh thank you, pleased to know that extensive may not be the same as severe! Will take a look at the group now 😊