Reoccurring Endo & Cysts

[Alixq23]

Hi Im looking for some advice if anyone has had anything similair...

4 years ago i had a lap surgery to remove a 15cm Fibroid cyst (told this wouldn't reoccur) In May 23 after having similar pains i had 3 smaller cysts removed (they just said fluid filled) but they also found Endometriosis (which wasn't on the radar at all) & removed it.

Quickly after, i was discharged and given no follow up on what the Endo diagnosis would mean for me in the future. Now starting in Jan 24 I've been having pains again! Similar bad abdominal pain & horrific pain after sex (something which has never happened to me).

Can anyone help with how i go about getting help - i have an ultrasound booked in to check for more Cysts but i can't carry on going through with constant surgeries - I turn 30 this year and the worry of infertility is crippling (no kids atm!)

any advice would be amazing!

[Lindle]

The first thing you need is a copy of the lap report from 2023 to see exactly what was found and done. That will influence your treatment going forward. You get this through what is called a subject access request. Look on the hospital website and search under subject access request or things like how to get copies of medical records. Sometimes there is a form to fill in and they might need ID. Ask for the lap report (I’d ask for the previous report too) all scan reports, histology reports and colour photos. It’s free.

If there isn’t anything on the website you can apply in writing asking for the same. Address that to the Data Controller, Records Department.

[Alixq23 in reply to Lindle]

Hi Lindle

I have a copy of my last one and it's states endo was found and removed... but they didn't say anything else about it! Is it normal to not be offered any help moving forward?

Thanks in advance

[Lindle in reply to Alixq23]

Is it definitely the actual lap report and not a discharge note given to you in hospital?