I was diagnosed in 2017 with a left side endometrioma after many many years of complaints of pain, heavy bleeding, longevity of bleeding, constant anaemia, back pain, bladder concerns and pain down my leg. In Nov 2019 I finally received my *diagnostic lap with cystectomy* too be told everything was glued together and stuck with ovaries and tubes sightly twisted. I was also informed I have deep infiltrating endometriosis particularly in the recto - vaginal area. (After surgery I was told very little, advised very little and not even guided in after care etc. Simply told to go into medical menopause- which I have not as I’m worried about weight gain and effect on diabetes)
I had a CT scan with contrast 1 month prior to NOV surgery and allegedly this was clear, but turns out it wasn’t clear at all. After surgery in January here I had an MRI without contrast (awaiting results).
I have been advised I am to be referred to Antrim Area Hospital, Knightsbridge Private Hospital and Women’s Clinic Ahoghill (Ballymena)
Has anyone been under this doctor or on the waiting list for this Dr?
Does anyone know any other *Specialist* Endo Doctors in Northern Ireland ?
Any guidance would be good, I feel like I’m slipping through the cracks and my health has suffered shockingly, some days I can barely make it around the house let alone live my life as I used to! TIA
So within the UK stage 4 should only be treated at BSGE centres. Which have specialist gynaecologist who work with colorectal surgeons , urologists, pain management etc. You can Google BSGE website and look at the centres. I don't have any experience with NI centres. If your struggling to get the correct referral you should be able to Google the NHS NICE guidelines for the diagnosing and treatment of endometriosis to be able to quote the requirements.
I don’t think we even have BSGE centre people say we do in Londonderry but it is not locatable online x
There is a provisional BSGE centre in Altnagelvin.
Every time I search for this I actually struggle to find it or information about it. Every area should have one, or at least two in the country to make it accessible for all. So many are fleeing to mainland for support and having to pay thousands and some of us simply don’t have that luxury.
Yes it’s really difficult to find on the bsge website. I actually had a private appointment with the lead consultant this week. Happy to discuss via pm if needed x
Its 2020 now & its not an accredited Centre. We have no BSGE centres and consultants unwilling to refer us across the water for excision.
Am sitting in altnagelvin right now Ward 43 ,was admitted with stomach pain . I was told I had endometriosis Back in 2007 and then got keyhole surgery. After that I was told your endometriosis has gone away your womb etc is clear. But now every time I have a really bad flare up before and during my period am told it’s not endometriosis cause you got the all clear few years ago. But am I right in saying hold on can’t endometriosis grow back?? . They don’t want to know, I refused to be send home yesterday as I couldn’t even walk I was in that much pain I was brought in by ambulance on Tuesday at 3pm and I was only getting to ward at 2 this afternoon Wednesday (waited over night in a@e) 😡and yet once am up in gynaecology ward am told nothing to do with endometriosis. Cause you got the all clear years ago,Am so angry 😡 sorry for the long post lol
What?! I’ve been diagnosed with stage 4, and there’s a BSGE hospital 10 miles from me... why would my consultant not tell me that??? I think I got some research to do before my next appointment.
I don't know why you weren't told. I'm aware that alot of GPs aren't aware but you would think gynaecologist would be. But they should have referred you straight there. If they found it during surgery they literally should have stopped, sewn you up and referred you to the bsge centre.
Where in the UK are you based? You shouldn't have to wait till your next appointment to get referred. Unless your in Scotland where only a gynaecologist seems to be able to refer you on. If you need any more directions on this feel free to message me.
I went on the BSGE website and that hospital is no longer listed, it was Preston.
Now my closest is Sheffield way, which is too far. It’s a shame I moved from London where there are 3 in the South East London/ Kent region
Preston is still one I just looked and there 3 in Liverpool too?
That’s very odd- when I looked it wasn’t! But the icons were pink and not blue? Thank you. You’ve made a painful day feel a bit better💖
Ahhh I think you accidentally clicked on the provisional centres rather than endo centres as I think they show up in pink.
hello I am currently seeking treatment in one of these centres and I am finding it hard getting a phone number did you end up going here Christina?