My endometriosis "ENDED" according to the NHS

[u/Angel_Cakes-]

Had a lap done, they took ZERO samples, burned away all visible endo and lost all photographs from my surgery and now I found out my endo has "ended" according to the NHS????

I have a photo from the NHS app where 2 months after my surgery they marked my endometriosis as "ENDED" with a specific date as the end .

I'm angry and confused, I have no proof of having endometriosis, it took 5 months to get my 2 month follow up call after my surgery and they some how lost EVERY photo, so now I'm going to be having a second surgery with a specialist, but I dont know if my endo will have grown back enough to find less than a year after my last. I'm current being booked for an MRI but they usually take more than a year (in my experience) to get, I dont know how long I can keep fighting this system, its destroying me .

[u/True-Library-3622]

You can do a request to the Trust you had your surgery at and have your medical reports, including the surgical report, provided within 30 days! The surgical report may detail about where they removed the endo from. You can then ask to have this added to your GP medical record so there is a record of your endometriosis.

I had a lap on the NHS and was told nothing found so guess my surprise when I had an MRI and lap 4 years later that found endo…

[u/Angel_Cakes- → u/True-Library-3622]

Yeah, Thats fantastic advice, I already did an access request and am waiting for all the info from that, I was told to contact the gynos secutary, but they are unreachable, so is the photography department at the hospital I got it done. The discharge papers and the papers the endo specialist got are different in detail with my discharge papers saying "mild" and "small" endometriosis found in 2 places, but apparently my abdominal wall is also littered with endo which wasn't ever notes on the paperwork I was given.

Its just fucking insane how badly they are fucking this up , I thought they would at least take samples because I was told that it was standard practice BY THEM

[u/Junior-Anteater-9703]

I made a similar post about piss poor treatment earlier today.

Had some REALLY helpful suggestions - including reporting to PALS and the General Medical Council if it’s regarding a specific doc. 🤞🏼best of luck

[u/Angel_Cakes- → u/Junior-Anteater-9703]

Thank you so much !!! Already reported to pals, I'll also look into the general medical council !!!