Recommendations for UK BSGE centres?

[M1673402]

Hi, anyone have any recommendations for the above? I’m seeking private treatment for stage 4 endo and need to go elsewhere as there are no centres where I live in NI. Any advice greatly appreciated! Thanks in advance xx

[Moon_maiden]

HiUnfortunately recommendations can’t be made here.

Your GP can refer you anywhere in the UK. I was under BSGE surgeon last time, unfortunately he didn’t have a colorectal surgeon when he operated even though it had been diagnosed on the bowel. I’m now with a very experienced team, mainly colorectal with Gynae input and waiting for op. Experience counts a lot, look up surgeons and research individually.

Wen your GP refers you ask them to add to your records all hospitals within area where you want to go and include the private ones doing NHS appointments. Ask for booking reference and you can go online to check appointments. Ask the private hospitals who the consultants are that do the NHS ones. I screwed up there with pain consultant, ended up with one at the same hospital I’m already with 😂🤦‍♀️ It may not be suitable for you at all. Trust your gut, first Gynae I saw was really nice, experienced with Endo but only did those to a point. He referred me to his mate and I wish I’d trusted my gut.

Not sure if any of this helps

[M1673402 in reply to Moon_maiden]

Thank you! It does help, even just knowing that I can actually be referred anywhere in the UK. As I’m in Northern Ireland and there are no centres here I feel I’m being fobbed off a bit, well that’s just that then, meantime I’m in pain and it goes against all nice guidelines etc as to what’s meant to happen with stage 4 endo, I am just so frustrated already and feel like I’m not getting anywhere! Hopefully you get your op soon and thanks again for posting x

[Moon_maiden in reply to M1673402]

It is very frustrating getting anywhere. Your GP can help with the pain and at the very least refer you urgently to the pain clinic. You have to tell them the referral is to be urgent, they won’t otherwise.They can give you decent painkillers as well, mine have been crap initiating anything. They get crappy around opiates even though there’s plenty of research that if you’re in real pain it’s unlikely to cause an addiction but you still need to be careful. Another reason they don’t believe us. Nefopam is a relatively strong non opiate based med but they get reluctant as it’s more expensive. The pain nurse said Tramadol is better than codeine and paracetamol regularly helps opiates work more efficiently.

With this it’s more proactively taking rather than retrospectively. It’s more difficult for them to work when you start to need it.

[M1673402 in reply to Moon_maiden]

Thanks for the advice moon_maiden Luckily my GP is good with pain relief and are issuing it without any bother, I think they see it as a quicker way to get rid of me rather than referring me anywhere else to actually try and get me sorted 🙈😂

[Moon_maiden in reply to M1673402]

That’s great, makes life easier.I’ve had referrals but nothing different to what they could’ve done. They haven’t cottoned on as quick as your GP 😂

I’ll just go straight to 111 or A&E next flare if there is one 🤣

How are you today?

[M1673402 in reply to Moon_maiden]

I’m ok thank you. Up and down just trying to get my head round everything but thankfully pain wise a good day! Thanks again for your reply xx

[Moon_maiden in reply to M1673402]

It takes time to even begin to get a plan going with all this. Jot things down as you think of them, helps keep you on the right track.Hope today has been just as good pain wise.

[Meljayne]

Good luck! Sorry I don’t have any advice ! Can anyone explain to me the different stages of endo ? X thanks Melissa

[M1673402 in reply to Meljayne]

Thanks Melissa. If you have a quick Google there is lots of info which could tell you about the stages in more depth and lots of advice on here if you search past posts you can look for specific keywords on particular topics too which might be helpful x

[Endo_Jaded]

I’m in NI and there is, in Altnagelvin with Dr Moohan, he seen me within 6 months and that’s after I contacted him because my own surgeon let me down so disastrously. Avoid Belfast. But get a referral to Dr Moohan his Endometriosis clinic runs every 1st of the month and he has 20 years experience.

Be expected to wait though, there’s people stage 4 plus just being seen in NI now after 2-4 years. Myself included. Private with bowel involvement, I was quoted £15+K on the mainland and that was without accommodation.

My surgeon at AAH is NHS and private and because he’s private people get to jump the queue. A friend tested this theory only this week. I’ve not met this surgeon in person in the two years I’ve been under him obviously with covid but he give me two 5 minute calls and one was to give me bad news (that due to the wait I’m now highly likely losing my bowel) and he didn’t even reassure me.

My friend rang him privately on the same day I did requesting an appointment. I was told 8-12 week for one under NHS, she rang and privately was told he has a cancellation tomorrow!

So be aware of that.. I’m losing my bowel all because I couldn’t afford private care under the AAH doctor who left me with Endo on the bowel and frozen pelvis, endometrioma, triple enlarged Fallopian tube and every chance of conceiving ever again gone after being left from 2017 and still waiting now.

This is why I jumped on here when I seen your question. It’s so hard to navigate NI and I’ve already written to Robin Swan after his Long Covid centre proposal, when he can’t open more endometriosis centres for women crippled by this horrible disease.

Don’t give up, if you want to stay in NI see Dr Moohan, if you want to go private go to Dr Mann in Birmingham he’s had great reviews but do your own research to make sure it’s a fit for you personally too.

I wish you all the best in your journey and hope it’s a quick one.

Xx

[Endo_Jaded in reply to Endo_Jaded]

Also, I’m on butrans pain patch it last 7 days and they do get touchy about opioids but the body reacts differently to codeine and tramadol- if you look it up one works better than the other depending on the person research has shown. For me Tramadol was like taking smarties literally just made me sick and nothing more not even a bit of relief. Codeine at 30/500mg took the edge off but my pain was so bad I was bed bound, so I’m now on Buprenorphine Patches 15mg at my request as I like to know the pain I’m in and monitor it, rather than mask it all. I have clearance to take codeine and paracetamol but requested this also be 12/15mg of codeine to keep it low as well. I don’t like taking anything stronger unless it’s truly warranted due to addiction and reliance.

If you PM me, I may be able to help you better location wised. Especially with you in NI. I’m an hour away from Derry and 30 mins away from Belfast and I’ve had Endometriosis for 20 years 15 undiagnosed and passed around like a prized Turkey. So I now try to help women as best I can cut down their journey time and show them how to fight or advocate for themselves.

I have a law degree and my passion was always medical law (can’t practice due to my health, so I’m medically retired awaiting surgery).

Again good luck and I hope to hear from you xx

[M1673402 in reply to Endo_Jaded]

Thank you so so much for this Endo_Jaded Great to actually have a name and an avenue to start looking into! And I am so sorry to hear of your experience, it is an absolute disgrace!!!! I’m wondering if your surgeon in Antrim is the same as the one I had. He has quite a good reputation but not a very good bedside manner and to his credit he was honest with me in saying he just didn’t have the experience or skills to do what I needed. I also heard about Dr Mann but he now appears to be retired which is a massive shame as he seemed to be a great asset in helping those with endo!

My situation is that I had laparoscopy and was told I have stage 4 endo and all the bowel involvement and adhesions etc that go along with it. I was asked right after surgery did I want to prioritise pain or fertility - stupidly at the time I said fertility - then thinking afterwards it’s not what I want, I want to deal with the route cause of my pain before contemplating ivf etc, also I’m worried as there are rectovaginal nodules, such severe adhesions etc I wonder if it would even be safe for me to be pregnant if such a thing could happen (they think this mightn’t be an option anyway as they may not be able to reach ovaries due to the extent of adhesions)

I feel I’ve been almost made to be afraid to go down bowel surgery route as I might end up with a stoma etc, I feel it’s almost a bit of a cop out so I don’t go down this road as surgeon admitted himself there isn’t really anyone in NI with the experience to do this, then went on to mention two names but that one was retiring and one had a waiting list of many years….that may be true but if it needs done and could impact on my future health so severely then I’d rather try and get things moving now than be made to feel afraid of that option!

Anyway, apologies for this very long message, like most people here I guess all our individual stories are not straightforward and it’s all just very frustrating! It is definitely impacting my mental health trying to cope with everything never mind trying to advocate for myself and even find out the options that are out there, I appreciate you replying and all the advice so thanks once again

[Jenn2022]

Hi, sorry if this is a dumb question but I looked up the bsge centres on the bsge websites but with a couple of exceptions they're all NHS hospitals (my closest bsge centre is my local hospital). I've been told that hospital isn't doing any gyne surgery at all now except cancer related, so even though I've got an appt to see the team, they're not going to be able to do anything. So I guess my question is: how do you find out if your local NHS surgeon also does private surgery? ATM I'm booked to have surgery with Spire because I don't see what alternative I have.

[M1673402 in reply to Jenn2022]

Hi there, I’m not too sure about this, it might be worth posting a separate query in case it’s getting lost in here! For what it’s worth I was also told my hospital was only doing cancer related surgery but after having tubo ovarian abscesses I got surgery through the nhs about 6 months later but I know every hospital is different! Good luck with finding the right info to help x