How to be referred to endo specialist in Northern Ireland

[Teal09]

Hi all,

Just looking for some advice please… I have suspected endo after a few years of symptoms leading to a 7cm endometrioma being found on my left ovary. I’m now on the waiting list for a lap, to remove the cyst and deal with any other superficial endo they see…. I’m under a general gynaecologist on the NHS. I’m in Northern Ireland. I was told that the surgery could be done by any of the gynaecologists in the trust, depending on whose turn it is when I reach the top of the list basically…. To be honest I don’t like the sound of that. There’s a risk to the ovary, and not being sure of who exactly could do the surgery makes me nervous.

I know there’s a provisional endo centre in Belfast, but I don’t know what exactly criteria I need to meet to be referred there. Or even to see a gynaecologist who specialises in endometriosis… how do I go about it if I could be referred to someone else? Do I need to speak to my GP? Or pay to go privately at least at first?

Any advice would be very welcome 😊 Thanks!

[newstart2020]

hi there teal09, hope you are doing ok there. it's difficult to know where to start that's for sure. your gp can refer you to a consultant so that you can at least get scans (mri) done. endo doesn't always show up on them (i had stage iv endo, didn't show up on scan) but it's a start. there are no endo specialists on the island of ireland. none. it's horrible to say, but they don't have the teams in place, or the experience to do complete excision surgery. the scans would be useful for an experienced surgeon to get a baseline of where you are. if you have any private health insurance i would try to use it with one of the experienced surgeons across the water if that is an option at all for you. or take out benenden insurance and once you qualify (you have to wait six months) see if they still have experienced surgeons on their bupa list. there are maybe a dozen really good surgeons in england. maybe things will change here but that's where we are, which is a disgrace. there are quite a few support groups about (a gentle warning to avoid a certain private dr *u*ter).

[Teal09 in reply to newstart2020]

Thanks so much for the reply, yep it is definitely frustrating to have so few options… Do you know by any chance if I were to get an appt with a private consultant and then go for surgery with them through nhs, would I be back to the bottom of the waiting list??

[newstart2020 in reply to Teal09]

Sorry to be so negative! I think if you have surgery with NHS you should get follow-up NHS assessments, though there seems to be a very long waiting list for those now. After the private surgery I had, I was put back under the care of the endo consultant at the Mater in Belfast. I had a follow up phone consult with her after six months. She's left now and there's a new guy in post. He recommended lupron to my niece who also has endo, and he said because she was young he would probably do a conservative surgery and leave some of her bowel endo behind. Neither of those things are consistent with what she would like to do, so she's also going to travel for treatment with someone who doesn't want to give her a bone density-decreasing and mood wrecking instant menopause, and someone who knows how to remove all the endo without leaving any behind.. It is very difficult for us here for sure.