Waiting for referral after laparoscopy!

[Pureunicorn]

Hi all, on the 28th June I had a laparoscopy, the surgeon was ment to remove cysts on both ovaries and any scar tissue but all they did was take pictures, I spent the night in hospital then was discharged, the only thing they said was I have stage 4 endo my bowel, ovaries and uterus are all stuck together and the endo has spread and they are referring me to another hospital! I've now phoned them and they still haven't made the referral! I just dont know what to do 😢 I feel like I've just been left with no one to talk to and no one to give me any answers! Has anyone gone through something like this? Or know how long it could take for them to make the referral?

Thank you xx

[HikerGirl]

Hi Pureunicorn, you basically just wrote my own endo story word for word.. I think I can give you some advise on this. My first lap was in Oct 2018 and I was promised a referral due to bowel/ovary mash up but by December they’d done nothing. SO advise I wish I’d had at your stage:

- make a doctors appointment (all referrals must come from them so it is them who’ve slowed this down for you)

- make sure you have the notes from your consultant gynae that just operated, especially the one where they recommend a referral onwards (call their secretary and they will post them over)

- research which BSGE clinic you feel is best for you, I chose mainly by the surgeon as not all of them are as experienced with bowel endo. Go to the BSGE website and then basically google each surgeon until you find one or two you think are suitable. (See Nancy Nook Facebook page for advise on what to look for in an endo surgeon)

- at the docs appointment, explain what you’ve just told us and then request they refer you to the hospital of your choice - they HAVE to do this even if it’s outside the area. Don’t let them tell you otherwise.

Then basically just chase and chase them daily (I made friends with my docs secretary in the end) to make sure the referral goes and chase the other side to make sure the hospital arranges the appointment.

Be mentally prepared for a wait I’m afraid. Most BSGE’s have a 6 month or more waiting list just for a consultation and you will need 2 or 3 and some tests (MRI, possible sigmoidoscopy/colonoscopy) before they’ll set a date for surgery.

I skipped some of the consultation waiting times just by booking to see the consultant privately but that’s not always an option for everyone.

Currently I am still waiting for one more test before hopefully my next surgery date will be set in October A WHOLE YEAR since it was recommended 😣 I’m dreading them telling me the waiting list for surgery is 12 months...

Anyway, good luck! Sorry for the long post but I have learnt so much the hard way in the last year and I just can’t resist sharing it and maybe helping someone else’s journey to be a little quicker xx

[Pureunicorn in reply to HikerGirl]

Hi thank you for ur reply, I've started looking into some of the options u said about. I've been in contact with both hospitals and they have finally made my referral!! The doctor had forgot!! So well worth keeping on there case to make sure u get somewhere! Now w8in for a letter with my next appointment, so fingers crossed it comes soon as the pain has started to get worse again n even the tramadol, ibuprofen n paracetamol aren't helping and I'm kot sleeping so feeling even worse. Once again thanku for the advice x