Endo stage 4 NI specialist : Hey everyone... - Endometriosis UK

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Endo stage 4 NI specialist

Endowarrior7
Endowarrior7

Hey everyone,

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 Dr David Morgan of 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 ? (Not Dr Hunter)

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

42 Replies
oldestnewest

Hello

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

User9
User9
in reply to Christin_a

There is a provisional BSGE centre in Altnagelvin.

bsge.org.uk/bsge-provisiona...

Endowarrior7
Endowarrior7
in reply to User9

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.

User9
User9
in reply to Endowarrior7

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

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?

bsge.org.uk/?geodir_search=...

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.

I'm in your boat too. Stage 4 (I was not aware it was this stage before laparoscopy in September) 5.5 hours in theatre. I feel worse than before- periods heavier & extremely sore, bowel is a mess, back pain unbearable (attending physio), migraines , constant fatigue, emotional and very bloating. I have actually now had my pain relief increased from surgery. I had operation in Belfast city ....was told after its severe. Feel like banging my head of a wall, but what do we do?

There are no endometriosis specialists in Northern Ireland. I can tell you that for a fact. I was told it from the very top of the chain. This needs to change- it's robbing us of our life, and our futures.

I don't know what my next steps are going to be either- as if we aren't going through enough, we have to deal with the burden of NI lack of specialists 🤦🏻‍♀️

I feel you girl 💛💛💛

Bespp
Bespp
in reply to Lyns88

I had my lapro with Dr. Hunter and just want to say stay away, hardly any support. (Severe stage 4) Just another person on his conveyer belt to offer a hystero. Have not been able to find another specialist as yet and have decided to live with it and manage the pain despite having private medical care. Just wanted to share a few things It has helped me:1) Go and see a chiropractic for pelvic pain,it does help with creating more space 2)take some magmesium supplement it helps with pain and recovery time after a flare up 3) keep an eye on the diet especially sugar.

Fingers crossed for you!

Endowarrior7
Endowarrior7
in reply to Bespp

Bee advised this Bespp from many others the list is so long. I’d say the ratio of suggesting to stay away vs go is at least at 8:1 right now nearly endo odds.

Wonders if we can use nhs doctors in the mainland or in the south? Or must it be private health care?

Horsie
Horsie
in reply to Endowarrior7

There's no Endo surgeon in the Republic either. There's one or 2 that do so some excision but there's a long waitinglist. So it's either some excision surgeons in the UK or going to other surgeons on mainland (Germany, Italy, Romania). Not allowed here to direct you further.

Stay away will PM you x

HellyLlewelly
HellyLlewelly
in reply to Bespp

Hi

Can you recommend what Chiro you use, I am a Northern Ireland local & felt in the past it did help me though my practice stopped treating me as soon as they heard I had a MRI with a few discs bulging. (These arent a source of my pain they havnt worsened in years and not even sore on manipulation.)

Magnesium in a multi vitamin is this the same?

Thanks so much

H.

Xxx

Bespp
Bespp
in reply to HellyLlewelly

Hi, i found Balmoral Spine Clinic - Belfast Chiropractor useful. He is not a specialist in endo but he does listen which is very important.

I have been taking liquid magnesium out of holland and barret Floradix Magnesium Mineral Drink 250ml

Going to see a endocronologist at the end of the month as well and will update.

Bes x

HellyLlewelly
HellyLlewelly
in reply to Bespp

Yes please do update!

Im definitely verging into Fibromyalgia territory and am being investigated.

I initially refused a year ago but cant avoid it now unfortunately.

Thanks so much for the recommendations and best of luck sister x

Endowarrior7
Endowarrior7
in reply to Lyns88

I was only aware because Endometriomas only form at stage 3/4 of this disease. I was in theatre first thing and out before visiting time - because they didn’t check my situation before going in and then couldn’t operate whilst in there *properly! So what could have been one will end up more that one. I am awaiting to see how deep it is, then proceed with a surgical plan. I already suffer the above inc bladder, fibromyalgia issues.

Who was your surgery with Lyns88 ? Have you seen your notes from surgery?

Lyns88
Lyns88
in reply to Endowarrior7

My surgery was with Dr Tang, who I totally adore and did everything in his power but most importantly told me the truth about how it's going to effect me.... I needed to hear it. He is blunt but to the point he done alot for me, my endo is just so aggressive.

I don't for one minute think it's fair how we in Northern Ireland are treated with regards to this matter. It's a total mind f**k.

I take it you don't have private medical?! I don't.... I'm not sure how the whole referral across the water works. I know it's possible with NHS but alot of that is dwn to having a supportive gp who is willing to go the extra mile.

💛 X

Endowarrior7
Endowarrior7
in reply to Lyns88

Couldn’t afford private and even if I could, I’d be classified in the pre existing category now. This was at the CITY hospital yes? X

Lyns88
Lyns88
in reply to Endowarrior7

Yes Belfast city 🙂

Hey,

You are probably better off that they didnt go further & maybe do harm! No one in Northern Ireland has the relevant training and accreditation to remove deep endometriosis.

We need BSGE Surgeons in BSGE centres for this. Not provisional ones with a nurse for advice.

Any of the surgeons who claim to (usually the ones offering Private Practice) are not qualified and its becoming very apparent they are using outdated techniques/appliances.

Re-occurence rates are high and some ladies are losing organ functionality & mobility as a result of being left with deep disease.

This is a province wide dismissive & cult we are up against.

The NHS care is substandard to the care we wd receive if we lived on the mainland UK.

Its another province wide scandal and a disservice to Women in Northern IRELAND.

Together we need to communicate, educate & fight this substandard care.

Please feel free to PM me

Well wishes & hugs

H.

X

Couldn't agree more! But it's like banging your head of a brick wall. Who listens in Northern Ireland?!? The pain this is causing women's both physically and mentally is no joke.

I am so open about my condition, I educate about it constantly. But I can't help like feeling it's a lossing battle unless you have thousands in the bank or private medical 🤦🏻‍♀️ why should we be treated differently to those in the UK?

We shouldn't be.

We have no representation you see & ladies prior have went away unhappy and probably stayed quiet.

Many told by their local MP's not worth the fight.

To me thats a disgrace the right MP wd fight it! Plenty of legal legislation being broken, lots the GMC would be interested in.

These Surgeons will get imvestigated by the GMC if enough people come forward.

My complaints are in progress.

Im not letting my fiends daughters suffer sub standard human rights and treatment against NICE guidelines.

30 years of being told there was nothing wrong with me by GP's and lost my career my social life, my fertility and

Pretty much my life to this Monster inside.

X

Couldn't agree more!

Hi. I am Alison and had stage 4 endo. I had an abdominal hysterectomy and ovary removal. Like you everything stuck down, and bowel problems. I was replying to suggest Dr Hunter. He was my surgeon and was wonderful. I dont know why you dont want to see him, i had heard some women say they found him difficult to connect with, but another female surgeon told me he is the best and she referred me to him as she said my endo was too bad for her to fix, but that if anyone could, he could. The day of my surgery I was upset and he had a full list to work on, but he sat with me and talked to me. If you really dont want Dr Hunter, (but I think you should), Dr Ian Harley, Ulster Clinic, did a previous endo surgery on me, and he also took the time to talk to me, which is so important. I hope you find someone that suits you, but again, the female surgeon told me Dr Hunter is the best endo surgeon and is the one surgeon that was my best chance......... Big Hugs, Alison.

Apologies Flydragon9, I don’t for one second think your surgery with DR Hunter wasn’t good, but there has me recent discussions of failures to adequately provide truthful surgical outcome, omitted surgical techniques used, and women receiving legal advises and unfortunately for me the list of women I have come across suggesting to avoid him is too long for me to consider. My children maybe Teenagers but we have no extended family so if anything were to happen to me it impacts them greatly.

I’ve read of Dr Morgan travelling and learning techniques, not limiting his knowledge to one field or one location for that matter, but I’m uncertain in his true success as I’ve yet to find a previous patient which concerns me. Either he’s that good that no other patient needs to be on sites like these, or the outcomes haven’t been as often as implied.

I have two nearly adult children is my family complete, right now yes it is! But I also don’t want a serious surgery if I can avoid it too.

And with the negativity and possible legal action for so many directions, I think it’s somewhat advisable to avoid a Dr with that growing reputation for my own personally sanity.

Endo Warrior I sincerely wish you well on this journey and that you find a consultant that suits you. Ali.

I am one of those women;

Substandard Surgery notes,

Failure to provide in the notes what was discussed with me post surgery,

Failure to provide surgical notes that were legible to other professionals.

Failure to listen to re-occuring symptoms 1 year post surgery.

Failure to just listen to my concerns at all,

Failure to order further investigative scans.

This Surgeon has been investigated heavily and apparently has a string of local women who have had similar ineffective surgeries/outcomes both NHS & Private.

Tbh I believe with the power of Social Media & information sharing that he will be repremanded in due course!

Fingers crossed.....

H.

Xx

This is me in a nut shell, with surgery with Dr Beattie in Antrim. Haven’t a clue what really went on in surgery, have no idea what the major concerns are other than the deep endo in recto vaginal, wasn’t even given after care advice. Was left in a bed after being told I’d be discharged by 2pm, was still there at 7pm sent home without prescription or advice.

He obviously couldn’t continue other than allegedly taking my stuck ovaries and tubes and releasing them... but did he?

He also told me that my Endometrioma disappeared by itself, many medical professionals have stated this usually doesn’t happen for an Endometrioma without rupture.

He seen my colonoscopy CT with contrast and said prior to surgery that my ovaries and tubes looked fine.

My life feels over! I’ve spent 10 years studying and getting my degree, while juggling two ASD children and now I’m stuck in pain and agony while trying to establish a career that I cannot get out to achieve!

HellyLlewelly who did you complain too? I’ve written to the health board NHSCT twice which went to gynae to deal with. Had the head Gynaecologist women call me and placate me with reassurances and apologies but still didn’t change my Dr or really hear my issues.

I’m wanting to write to the Alliance MP that has Endometriosis, the GMC, Health board, and even the government, but I don’t do good in public eye (very introverted).

My life was robbed of me from birth to 16, due to abuses and trauma, at 16 I became a mother by 18 I had two children and my life was devoted to them and improving me for them too. I’m scared that now this and the lack of care and compassion in N. I will rob me of the rest of my life! It’s discriminatory to women in NI that we can’t even easily obtain referrals to endo centres in mainland!

One Dr quoted me £7500 for surgery and hysterectomy! I can barely survive paying bills with being too ill to work never mind not being allowed to save that amount of money either!

Our Treatment is Grotesquely inadequate and ineffective.

Really sorry to hear.

Will continue on PM to you. X

Hi Helly, that's a terrible list of failures from the consultant, beyond a 'simple' inability to perform the needed surgeries or be clued-up on up-to-date methods. I'm madly nervous now. He did a hysteroscopy on me a few weeks ago (and he still hasn't dictated the clinic notes from it, let alone sent them to my GP), following up from an internal ultrasound he did just before xmas. I've been in pain every single day since the internal ultrasound. Last time I was this sore was post-lap, I don't quite understand it. I also don't know why he did a D&C during the hysteroscopy, how that helps with either a stuck mirena, newly diagnosed deep adeno or stage iv endo.

Has anyone ever managed to get a consultant here to recommend a BSGE referral from Northern Ireland to England/Scotland?

PS Thank you (brain fog, I think it was you?!) for mentioning the existence of Nancy's Nook Endo Education page on Facebook. It really did take me a week to get through all the innformation there and it is brilliant! x

Hi Alison how is your pain now?

Are you managing better post Surgery?

H.

X.

If you have deep-infiltrating endometriosis and all your organs are glued together, you need full excision surgery ASAP.

I am not aware of any experienced excision surgeons in Northern Ireland so cannot comment on that. The best piece of advice I can give you is to travel to the UK and see an experienced and highly skilled excision surgeon and get all endometriosis removed and adhesions lysed in one sitting.

Unfortunately do to this I’d have to go privately, and being out of work due to the pain means this isn’t feasible. Unless someone knows how to do this xx

Hello

There is a way of trying to get it on the NHS but unfortunately I don't have the information on this. But someone else may be able to help or with the help of some Googling you may find the information. I know that there is a thing where you can request that the NHS pay for treatment in another country in certain circumstances and I know people have done this for endo. So this may be an option to avoid going private.

Also there is a provisional centres in londonderry. The centres are reviewed I think in jan/Feb so it might be that once reviewed it becomes accredited. So keep an eye on that too as an option.

Each year every center has to meet certain criteria, such as a minimum amount of complex cases treated per gynaecologist listed. So the provisional centres can be that last year they requested to be included and spent the year accumulating the necessary records and documentation etc. Or that the listed gynaecologists name changed (this happened to my local one last year and as it's gynaecologist specific they went from being accredited to provisional)

Our province is using some blurb about Data Protection being the reason why we are still provisional BSGE and not fully accredited.

Its a load of tosh as we actually dont have any Surgeons qualifiable under BSGE, none at all.

You need to ask your GP to get you referred to one of the excision surgeons working within the NHS (there are several).

Check out Annie's post on the matter: instagram.com/p/B7b0xCTgRYb/

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