BGSE Clinic Referrals - Still Happening?

[Noodle31]

Hi everyone - just wondered whether BGSE referrals are still going ahead at the moment? I'm considering asking for one from my GP, as I'm going to be waiting for surgery anyway.

Thanks!

[Lindle]

Do you fit the criteria of severe/suspected severe endo or having been treated for some time in gynaecology without success?

[Noodle31 in reply to Lindle]

I have been diagnosed via MRI with two large endometriomas and a uterus which is partially adhered to the bowel. I am also currently in hospital as one of those cysts has now ballooned to 19cm...so I would say I fit the criteria, if it is in any way reasonable.

[Lindle in reply to Noodle31]

Yes if your uterus is stuck to your bowel then this suggests rectovaginal endo which must only be treated in a centre. The centres are tertiary care and referrals are different from normal hospital referrals. Are you in England?

[Noodle31 in reply to Lindle]

Yeah, and quite close to an endo centre in Norwich. At present I am in a different hospital as an emergency as the cyst has suddenly grown (was 14cm on scan in March). I was meant to be operated on then but everything was cancelled due to Covid. I am not sure it they are going to operate here, I think it depends on my pain level and their capacity. There was some discussion of potentially draining the larger cyst.

[Lindle in reply to Noodle31]

Have you rung the centre to see if they are taking referrals?

[Noodle31 in reply to Lindle]

Not at this moment in time, as I am in another hospital under observation. I'm aware these things are usually referred by a GP, so not sure of appropriate protocols etc.

[Moon_maiden in reply to Noodle31]

Hope you feel better soon. Hospitals can refer/transfer to other hospitals. Talk to one of the doctors.

Someone I know for something else, got transferred to a consultant who was more specialised.

[Noodle31 in reply to Moon_maiden]

Thank you. I shall see what they suggest.

[Moon_maiden in reply to Noodle31]

How did you get on?

[Noodle31 in reply to Moon_maiden]

Hiya - a doc at the hospital is requesting a referral to Addenbrookes, the BGSE in Cambridge. I'm back home for now with lots of pain meds and already preemptively grieving for my left ovary, but have felt so supported and cared for the last few days. They considered an emergency op but were scared of both the risks of Covid and of operating on me and causing more harm than good. I have moved in with my sister so there is someone to look after me and am hopeful for as speedy a transition as possible.

[Moon_maiden in reply to Noodle31]

That’s great news 😀

It’s possibly best to wait for the specialist even though it’s literally a pain. The specialist may have some good ideas, don’t rule anything out just yet. Hopefully they done their best to make it quick.

Do you feel a bit better about it all?

[Noodle31 in reply to Moon_maiden]

Well my left ovary is 19cm so I don't hold out much hope of it being saved. I would definitely rather be seen by experts in endometriosis as I'm afraid my care before was not great. I am just obviously still very ill and worried as there are other cysts on the right and I have always wanted to have kids. The last few months have been so horrible.

[Moon_maiden in reply to Noodle31]

Hopefully turned that corner now and you’ll get listened to. Sounds like they may have done this as urgent given the circumstances and the specialist will hopefully be able to save the ovary. It’s amazing what the right person can do.

It’s not quite the same, but the local hospital wanted to take someone’s lower leg, really bad infection and bone issues in the foot, a specialist in London took one look and said they can save it, they did and the leg is intact. No one else would have said that, even I didn’t think it was possible.

[Noodle31 in reply to Moon_maiden]

Thank you for your kind words. I have just contacted a local GP here by email and my current GP by email as they obviously need to be clued in and I'll need to be registered here. Will call and chase later if I hear nothing. I have been told to call the local hospital if I dont hear anything within a fortnight. I am of course hopeful of keeping the ovary but everyone seems to think it's probably a goner. I am so lucky to have supportive family and friends around me, and of course the great docs I've dealt with the last few days and the lovely people on here. A few months ago I would never have expected all of this to be happening.

[Moon_maiden in reply to Noodle31]

Great idea on GP in both areas. Maybe this will make your surgery think again.

It’s great the hospital are thinking ahead as well. 😊

Let us know how you get on with it. Here if you want a chat.