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

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Endo stage 4 NI specialist

Endo_Jaded profile image

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 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

59 Replies

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 profile image
User9 in reply to Christin_a

There is a provisional BSGE centre in Altnagelvin.

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

Endo_Jaded profile image
Endo_Jaded 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 profile image
User9 in reply to Endo_Jaded

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

HellyLlewelly profile image
HellyLlewelly in reply to User9

Its 2020 now & its not an accredited Centre. We have no BSGE centres and consultants unwilling to refer us across the water for excision.

Warriorpc profile image
Warriorpc in reply to User9

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

GeorgiaMC profile image
GeorgiaMC in reply to Christin_a

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.

Christin_a profile image
Christin_a in reply to GeorgiaMC

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.

GeorgiaMC profile image
GeorgiaMC in reply to Christin_a

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

Christin_a profile image
Christin_a in reply to GeorgiaMC

Preston is still one I just looked and there 3 in Liverpool too?

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

GeorgiaMC profile image
GeorgiaMC in reply to Christin_a

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💖

Christin_a profile image
Christin_a in reply to GeorgiaMC

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 profile image
Bespp in reply to Lyns88

I had my lapro 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!

Endo_Jaded profile image
Endo_Jaded 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?

in reply to Endo_Jaded

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 profile image
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 profile image
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 profile image
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

HellyLlewelly profile image
HellyLlewelly in reply to Bespp

Oh Id ove to know you got on with your endocrinology etc! X

Bespp profile image
Bespp in reply to HellyLlewelly

Had blood test done and vit D, iron, and vit b12 very very low. This explained all the fatigue and tiredness. Been supplementing and changed my diet and has been a great life improvement. So vit d, b1 b6 b12 and iron was reccomended. I use to be veggie for 3 yrs this is what most probably caused all the deficency. Back on eating meat again along fish and loads of veggies. but this time have removed sugar and wheat which they were causing a lot inflammation. A lot happier overall! Hope you keeping well x

newstart2020 profile image
newstart2020 in reply to Bespp

Hi ladies... I've finally worked out what to do next ecause of our peculiar Northern Ireland situation. I know I am in a very fortunate position to be able to do this, but I am going to see one of the Nook surgeons for a private consultation in England, then get put onto his NHS waiting list for a full hysterectomy done because of adenomyosis, and excision done on the endometriosis. I'm not sure what HRT-type things to do after surgery, but I'll take advice on it. I'm also going to see a specialist physiotherapist trained in pelvic floor dysfunction, privately unfortunately. I did further research on my treatment options in Belfast / Northern Ireland and there are presently none I would trust with surgery. I can't believe there is noone here who can properly treat us.

Can I ask who you are going to? I’ve emailed a few and been told it’s not possible to do this, the suffering of women here in NI is really unfair and disgusting that they cannot even pay for a specialist to come over on certain days, or to even train surgeons! It’s verging on discrimination in my opinion and makes me question what other medical areas we are suffering in because of disregard, lack of educational standards, or training and funding. I have deep infiltrating and seriously 😐 feel it getting worse towards the colon! And that was an uneducated surgeon who left me with and Endometrioma the size of a peach for two years and suffering in pain.. to be left again so far 4 months waiting on specialist and no proper notes nothing! I’d pay to be put on an nhs waiting list but can’t afford private because I’ve been out of work for two years due to the masses of pain and fatigue.

Hi Endowarrior, you're right, it is insanely unfair! I'm in the middle of trying to organise it for myself, I'll update with progress, fingers crossed. xxx

I've managed to get Benenden to fund £300 of private physiotherapy for pelvic floor dysfunction. As long as it's an HCPC and CSP physiotherapist they will fund it because the gyney consultant who I had been seeing recommended it. I'm booking an appointment with the physiotherapist in Waringstown who has her private clinic there. It's a start. :)

Endo_Jaded profile image
Endo_Jaded 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 profile image
Lyns88 in reply to Endo_Jaded

My surgery with consultant, 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

Endo_Jaded profile image
Endo_Jaded 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 profile image
Lyns88 in reply to Endo_Jaded

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

Lyns88 profile image
Lyns88 in reply to HellyLlewelly

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?

HellyLlewelly profile image
HellyLlewelly in reply to Lyns88

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

Lyns88 profile image
Lyns88 in reply to HellyLlewelly

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.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. I hope you find someone that suits you, but again, the female surgeon told me 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 consultant 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 Consultant 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.

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/

I cant see this link. What is the message within, is she someone who was successfully transfered for Surgery?

Any help wd be appreciated thank you 🤞

This is me in a nut shell. 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?!)It really did take me a week to get through all the innformation there and it is brilliant! x

Pm me please hun xxxx

this is me to a tee! I got my 4 years of notes back..he told me it cured my stage 4 endo in 1 hour 30min op. Told my gp I didn't have endometriosis anymore. Continued to tell her I didn't have endometriosis and my pain was endo related. He give me another surgery to remove endometriosis after all these statements!

Endo_Jaded profile image
Endo_Jaded in reply to duncsn

I find letters of complaint work especially with words like, legally, my right to sue, due care, negligent, limiting to life, disregarding pain, discriminatory due to being female and in pain, right to access care at a high standard and so forth.

Who is the doctor?

So a little about my history . I was told I had endometriosis 2017 after getting my appendix out(found endometriosis all over it) anyway ever since I been in so much pain each month, after so many flare ups I got keyhole surgery to be told yes you had endometriosis in the past but the surgery showed it’s all cleared up😡now am sitting in hospital as I could hardly walk with the pain and the doctors are saying sure you got keyhole surgery and it came back clear 4 years ago , it’s not endometriosis you have. And I know it is . Anyway I feel like there Just not listening to me and sending me home with painkillers. Am I right to say endometriosis can grow back??

Endo_Jaded profile image
Endo_Jaded in reply to Warriorpc

Yep without a shadow of a doubt it can grow back, as long as you have uterus, ovaries or lesions it can grow back. If it wasn’t excised it can grow back and sometimes even if it is excised it can come back. Sometimes, even after a total hysterectomy it can grow back. It’s like a cancer. It doesn’t vanish on its own, and usually poor surgery doesn’t get it all.

Who done your lap for you? NI is TERRIBLE as we don't have any endo specialists in our country, just gynaes with an interest in endo so there is no help or understanding here. You are literally banging your head off a brick wall and better to get the boat to liverpool to the specialist A+E there 😭

Endo_Jaded profile image
Endo_Jaded in reply to Andiepand

Sadly, it seems I am not permitted to say here because he was absolutely useless. He opened me up 30th Nov 2019 and surgery lasted 30 mins. Because he did no tests prior even knowing I had an endometrioma, when he got in there it was so bad he realised I needed a senior surgeon and and other bowel specialist among others. So this year is my fourth year from the discovery of my endometrioma and I am still awaiting surgery to have my life back. I am currently on Synarel menopause spray (no I’ll effects for me so far) Lupron (Prostap) has to many legal cases against it, and so many flaws I wouldn’t touch it.

My surgeons name is kinda like Mr (beat) with a (tie) as a junior and the alleged new one is (Mor) senior but hasn’t even seen me yet in over a year (gan).!!!

NI is seriously discriminating against Females needing this much needed surgery. We shouldn’t have to go private to be seen, or treated with dignity and respect!

I was quoted £10,000 without bowel involvement and nearly £12K with bowel, which I have and deep infiltrating in England private.. I can’t even save enough for a deposit for a house let alone surgery!

We deserve a specialist in endometriosis care. Altnagevin was supposed to be BSGE but it’s not accredited or used as such.

Piss poor and still suffering only now I suffer minor menopause symptoms, some pain (but I’m now on buprenorphine 10mg patch for Endo pain) most is now adhesion pain or fibroids.

Highly recommend Synarel for testing menopause and getting a little relief from bleeding, and a slight reduction in pain. It’s also nasal spray so if it doesn’t agree it can be stopped at any time.

Oh my god, don't start me on BEAT! I went to my gp doubled over in pain with gynae symptoms 6 WEEKS after i had a baby and my gp referred me as urgent and HE downgraded me to routine. So meant it was a year and a half to just speak to someone. I had to use my maternity pay to go private to see someone in belfast (apparently the 'best"). Everytime i met him he kept introducing himself like we had never met and done the exact same bloods i had done with my gp. I broke down in tears as i havent been able to look after my baby. I tried the pill and prostap, nothing makes its stop. He finally agreed to put me for a lap through NHS as i did nothing but cry and i have now been passed to (MOR) my baby is 19 months now and im so scared he isnt the man for the job :( its not fair, no one seems to care and even paying private which we shouldnt have too is like throwing money down the drain :( big hugs to you

Check out my post on Synarel as temporary option. If your surgeon is from the City hospital and it’s the one many see, I personally wouldn’t let him near me but that’s from having friends suffer badly.

DM if you’d like to join a group chat on signal or similar (I won’t be on WhatsApp shortly due to privacy risks)

You need to feel confident in your surgeon without a doubt. So if you feel it isn’t right then write and request a different surgeon, however, this could delay you. Xx

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