Help with appointment tomorrow

[Maviscat01]

Hi 👋

I have an appointment with my endometriosis specialist tomorrow finally after being on the surgical waiting list for over a year, with (what was reported in my mri 18 months ago) severe adhesions on my bowel loops, a 6cm complex cyst growing from left ovary into the border of my bowel, adhesions from bowel to the vaginal cuff they made from partial hysterectomy. 4 years ago was my last excision surgery where they found it pretty much everywhere in my pelvic area, and 3 years since the hysterectomy where they had to unstick my womb from my bladder.

I know there is a waiting list and I know women are suffering. However I have seen routine surgeries going ahead where they haven’t been on the list as long as I have and are not struggling day to day as I am. When I rung the surgical waiting list team they said I had been put down as ‘ routine’ my case was taken to MDT and discussed because it was complex yet I still have had nothing done. They have cancelled this app 3 times and praying they don’t cancel again.

Is there anything I can say or do to make my specialist bring my surgery forward? I’m on morphine daily. Thank you

[charlatan]

Hi, I’ve experienced the same thing. Been on the waiting list for years while trying to deal with excruciating pain. I was on morphine myself. My surgery is finally going ahead on Friday but only because there was a cancellation so the hospital called and offered it to me. All I can suggest is asking them to put you on a cancellation list and keep getting in touch with them. If you keep telling them you’re struggling and can’t cope they will prioritise you. Think it worked for me.

[Lindle]

I assume you are at a specialist endo centre in tertiary care. Unfortunately waits are long in complex cases where they have to organise the multidisciplinary team. It may be 'routine' within the context of complex cases but these operations can take many hours and therefore need a significant theatre slot. Even before Covid waits were around a year in some centres.

If you are in England to could contact PALS to see if they can speed things up.