Stage 4 and needing surgery

[Summer1111]

Hello, wondering if anyone could point me in the right direction? I have had surgery for stage 4 endo, including the removal of my left ovary and tube in Sept 2016. I need more surgery as I was told it was in my bowel but they were holding off surgery due to chance of fertility. I now need that surgery but the surgeon I had been seen by has stopped working for the NHS and we couldn't possibly afford to pay for the surgery privately as I know it will be major due to my bowel. Many Thanks

[Linley]

Perhaps things have changed in recent years but I thought Private consultants "had to still do time within the NHS" 🤔

Suggest you check with gma. org. uk re contracts, the other suggestion I have is fir you to find out who stepped into your Consultants shoes as someone must have been promoted. Good luck🍀

[Summer1111 in reply to Linley]

The fertility doctor told me that he no longer worked for the trust and was only practicing privately but I will definitely check this out again.

[Christin_a]

Hello as you have stage 4 you should be referred to a BSGE centre. These are specialist endo centres for the treatment of stage 3 and 4. Note that it is only the names listed on the bsge website that should operate on you. It includes the gynaecologists and also the colorectal surgeon (for the bowel).

[Summer1111 in reply to Christin_a]

Thanks so much for the reply... I don’t think we have one of those clinics in Northern Ireland... doing some more research today. GP said that she could only refer me back to the hospital I had been too in Belfast where my current surgeon had been 🤷‍♀️ she said a consultant would be the only person to refer us across the water.

[HellyLlewelly in reply to Summer1111]

Hi, she is correct, we have different guidelines to follow in N.Ireland and all out of area referrals are done at local GynCon level only. We are currently at a 4 year wait on Gynaecology new appointments and operations in Northern Ireland. It's a complete Crisis situation. I will reply further down.

(Sign up in Mater Gynae in March 2019 had Gynae Surgical appointments at 3.5 years)

Helly.

[Waggymumma]

Definitely as above you need to be referred to a BSGE Centre. It can be a bit of a challenge with your GP but keep pushing if they won’t refer you. Good luck x x

[NicolaJM]

Hi there, I am based in Northern Ireland too and have stage 4 endo, you should ask for a referral to David Hunter, it is a very long wait though.. I have been waiting for a hysterectomy with him for over 3 years.. you can also go to see him privately this costs around £200 and he then can put you on the NHS waiting list that way- that is probably the quickest way. I believe he is the best at endo surgery in NI and he works with a very good bowel surgeon. Good luck x

[HellyLlewelly in reply to NicolaJM]

Hi, Lots of changes hopefully coming to our Province after the Public attention that has been drawn on us Media such as TV and Radio

"A Province Neglected"

We are at 4 year Gynaecology surgical wait lists at present for non cancerous gynae.

Mainly the fact we do not have BSGE surgeons operating in BSGE centres and the main Dr seems to think a hysterectomy will cure Endometriosis so his patients try to return with symptoms and he tells both GP and patient it is not possible that its Endometriosis! He cured them!

This Dr has a patter of this that has affected many women in our province. This Dr ignored my bowel yet professed to treating it for Endometriosis. Left any dealing of it off paperwork (this is his party trick)

When the next Surgeon treated me my bowel was covered in Endometriosis and so was my pouch of Douglas. He certainly does not work with a bowel surgeon I can assure you that, we do not have enough Surgeons to cover operations never mind a doubling up on Surgeons. We are not getting NICE guidelines adhered to and we are literally 2nd class citizens over here, getting the worst wait times UK wide.

Usay Compare Insurers can give you a policy now with a leading Insurer for £45 a month that will have you be able to claim for your hysterectomy within months if you wish. It will cover you to see the best in the UK who can also do excision surgery. Stay away from Dr CM in Birmingham too please, reports are not good and they are a plenty!

Benenden also offer policies from 13.00 per month for new conditions not claimed for or investigated before.

If money is an issue for insurance ask a parent or family to help.

I would advise anyone in Belfast to stay away from them Surgically for Endometriosis removal. They are not qualified. The Belfast Trust wont Give Dr H$n#e@r qualifications and trainings out on a freedom of information request stating it compromises his privacy?

You only need go and look on Bupa finder UK and put in any Surgeons name ....Dr H#n#e@s reads like wind rushes could roll through it.

He has undertaken no MIGS training and no fellowships, no further surgical laparoscopic training to treat Deep Endometriosis. Its public information on Bupa look it up in Google for yourselves.

There are plentiful circle of women who have had our lives altered adversely at the Surgical hands of our "Best Surgeon".

I'm sure the lady Surgeon following in his footsteps will be better when she starts her "first" endometriosis excision surgeries this year!!

Isn't that fab!

Please do not end up like many of us, sitting finding each other through social media talking about how our lives have been ruined at the hands of Belfasts most incompetent Surgeon.

Run for the Mainland UK.

Personal 1st hand patient reviews after 6, 12, 18 months are the best ones to get.

Very decent Surgeons at CEMIG Ashford & St Peter's

And Hallesowen Hospital West Midlands.

[Summer1111 in reply to HellyLlewelly]

Thanks for all the information. I had been looking up that benenden insurance yesterday but I didn’t think I would be covered for my endometriosis as I’ve already had surgery for it in sept 2016?

In some areas it says pre existing included and then in others areas it says not.

[HellyLlewelly in reply to Summer1111]

Hi,

Benenden work on a big pot of everyone's premiums paid into and they decide on need not past history. A friend has had several surgeries on her shoulder with them over the years.

Worth 13.00 a month for peace of mind.

H.

[Nualabula in reply to HellyLlewelly]

I second all of that!!!

[Summer1111 in reply to NicolaJM]

Dr Hunter did my first surgery but he is now working privately only... I was quoted over £20,000 for my surgery in England and we don’t have that money unfortunately. Thanks for your reply.

[HellyLlewelly in reply to Summer1111]

Are you sure he doesn't do NHS Surgeries?

I'm just interested in hearing about how you know that?

X

[Summer1111 in reply to HellyLlewelly]

After our failed IVF I asked for my file to be sent back to him. The consultant in the Royal Belfast told me that he no longer worked for the trust only privately. I also contacted another gyne consultant I know and he was able to confirm and tell me who had taken over his role.

[HellyLlewelly in reply to Summer1111]

Thanks so much this is really telling that he has Surgically left the NHS.

I believe all the Complaints and court cases I know of against him are making his employment options more limited.

Would you consider the insurances?

I really think Benenden wd cover your Endometriosis.

For the premium less than 13.00 it's worth going for! I was considering taking myself but went for a moratorium policy with USayCompare it will cover me in 2 years for anything not claimed for/investigated for in 5 years of history. New symptoms covered. I'm likely getting a Fibromyalgia dx from them. My paperwork is in being reviewed for my Claim.

H. X

[Nualabula in reply to Summer1111]

I had a second appointment around 5/6 weeks ago at dr hunters clinic. I didn't see him personally but he was in the next room 100%. Regardless I will not be returning to see him again. I have neen under his care for a year without any physical exams, scans, pain relief. He didn't follow through on anything that he said he was going to do. He asked me if I was depressed!!!!! He left out the majority of our conversation in his clinic letter to my g.p. My g.p has now referred me to Altnagelvin Dr Moohan. I havd heard good reports but we will see.

[Hellogie in reply to Nualabula]

I can also say that my experience with Dr H was absolutely awful. Charming approach on the outset but once I showed any sign of intelligence/confidence in knowing my own body re my symptoms he completely changed. Told me to drink less caffeine … asked me had I been to counselling and was I an anxious/depressed person. Found his manor inappropriate at best during my internal scan… the female nurse who was present during the appointment found me afterward to inquire if I was ok. I was too startled and having had no diagnosis of endo at the time… I just took it as another failed, expensive and humiliating trip to the doctor. I wish I had more confidence in myself then, but the system had broken me. He told me my scan was ‘unremarkable’ and that I might have a tilted uterus but I should be able to get pregnant (which was not my concern) and really other than a bit of IBS there was nothing wrong with me that exercise couldn’t help, plus a laxative.

I have thought about that appointment more often than I’d like, I regret not filing a complaint specifically in relation to Dr.H

My symptoms (obviously) persisted and last year I saw Dr Nagar , I paid for a MRI which showed ‘possible bowel tethering’ to my uterus and a loop on my colon. He performed an investigatory Lap 2 weeks ago on the NHS. He found endometriosis on my bladder, in my urethra, my bowel, colon, all walls of my pelvis, pouch of douglas, appendix, right ovary … all organs mentioned outside of my uterus had fused together. He removed what he could and released these organs. I am aware I will need to seek a team for further surgery if i am to get any relief from my bowel issues etc . And to have my ‘bulging inflamed’ appendix removed. I am also aware I will likely need to save my money to travel for this and stop wasting my time here.

I found Dr Nagar very straightforward and not once did he dismiss my symptoms or feelings. He listened carefully to my concerns. Obviously my MRI result spurred on my Lap, but I have found him very professional and understanding to date. Unlike the 7 gynaecologists I have seen over the years.

I am 38. This has been a 20yr plus journey for me. I was dismissed relentlessly over the years despite presenting in a&e mulitiple times between paying for private consultations. Consultations that spanned multiple discipline's might I add, as my symptoms show themselves in multiple places. All dismissed. I struggle to breath, my bloating is unmanageable, I am losing sensation in my right leg, my bladder and bowel movements … are terrible. The list goes on.

Dr Hunter is not the only ‘specialist’ to have dismissed me, but for someone who claim's to specialise in endo, it’s laughable. He can NOT read scans, no one in NI can. As far as I can tell hysterectomy’s seem to be their favourite card to play… dismissing so many women afterward when they still (shock horror!!) display symptoms.

The duty of care here in NI for Endo is abominable… it would be forgivable if they had the decency from the outset to say, I’m sorry, from what I hear you seem to be presenting signs of endometriosis , I am not qualified enough in this area … here’s a referral for someone who is and who can EXISE the tissue… but instead they don’t, they gaslight us and protect their egos. Resulting in a shattered sense of self amongst so many of us, a feeling of humiliation, depression and failure… this suffering is unnecessary if only the system and the lack of teaching on this disease was more transparent

[HellyLlewelly]

Nothing about what you have been told makes any sense. True excision paves a way for fertility. Why on earth and who said youd bowel Endo and decided to leave it there inside you? Disease left to progress is dangerous.

Bowel endo can be removed in a Laparoscopy by any BSGE Surgeon and the Trust reiterrrate over & over Dr Hunter works at BSGE level.

I miscarried a baby due to being left with Endometriosis and it was a traumatic and unneccecarry loss. Mine was spotted during internal ultrasound and I was left with no removal or treatment plan.

I eventually had excision 2 years later and fell pregnant a year after on our choosing to try then.

The amount of patient palming off is a disgrace. If you have it you need it operated on timely.

X

[Nualabula]

Can confirm that Dr Hunter no longee works for the Belfast Trust. His Endo clijic has been taken ovee by a consultant Dr Joanne McKenna.

[newstart2020]

This is a reply to an old post... Dr McKenna has now left and been replaced by Dr Shaun Mcgowan. He was trained by an excellent endo specialist in England, but seems to be taking a 'conservative' approach to endo surgery. There's so much evidence out there that shows that the best endo surgery is the one that removes all the endo, and that leaving any endo behind (my god, deliberately?) leads to regrowth and repeat surgeries.