NHS endo appointment

[endo_the_stigma]

Hi all,

This only relates to people in the UK on the NHS for endo treatment:

I have been seen privately by Mr Afifi at the Birmingham endo clinic for an initial consultation, an MRI scan (which showed up endometriosis and adenomyosis) and a follow up consultation but, because I can't afford the £7.3K for my surgery privately he has referred me to Birmingham Women's Hospital on the NHS which I was told the wait for surgery is 12-18 months with him as the surgeon or around 8-9 months for one of his team to do the procedure. Today I have received a letter from Birmingham Women's Hospital with a 'V1 appointment' confirmation at the end of the month but it does not specify what the appointment is for? Like is it gonna be an initial consultation like I had privately? Or will it be a pre-op appointment? I assume not the latter because surely it would have more information on it? I can't seem to get through to the gynae department at the hospital to ask these questions which is why I'm posting it on here to get some advice from my fellow warriors who may have already been through this process💛

[Lindle]

Do you know how severe your endo is from the MRI? Imaging usually only shows deep endo and endometriomas which are often found together. Deep endo and/or rectovaginal endo must only be treated at an endo centre and he is the only advanced surgeon there qualified to do it if it is severe.

[endo_the_stigma in reply to Lindle]

No, he said he was unsure of the severity until he does the lap but is hopeful it can all be excised - He couldn't see anything on my bladder or bowel but my uterus is retroverted which made it difficult to see everything clearly

[Lindle in reply to endo_the_stigma]

I really don’t know why he had even suggested that one of his team could do it. It sounds like it is most likely severe endo - a retroverted uterus is often an indicator. This has to be treated in a tertiary specialist endo centre by a multidisciplinary team lead by him. This is laid down in law.

In terms of the appointment you’ve had through this might be general gynae that has organised this without any awareness of how treatment of severe endo works.

Your best bet is to get a copy of the MRI report to see exactly what is involved. If as I suspect it shows what is classed as severe endo for treatment purposes then there is no argument - you have to be operated on by him and his team in the centre.

I run a group and we look at reports so if you want to join we’ll be happy to do that . I’ll be you later.

[endo_the_stigma in reply to Lindle]

Oh okay - there's so much to take in through all of this it's actually so baffling😵‍💫 Thank you for explaining it all properly - if I could join the group so someone can take a look at my MRI report that would be much appreciated😚

[Endohasme in reply to Lindle]

Lindle could you please send me details of your group? Would really benefit from my MRI being reviewed.

Didn’t realise I could request it so thank you for that info!

[Lindle in reply to Endohasme]

Have just sent the link to chats .

[Kiki1797 in reply to Lindle]

Hi is this group still going? If so could I have the link please. Thank you c

[Lindle in reply to Kiki1797]

facebook.com/share/g/14NMHD...

[Kiki1797 in reply to Lindle]

Thank you

[BloomingMarvellous]

Lindle is right that you need to advocate for the correct treatment pathway and her group is a good place to get clear direction with this very confused area ( take it from me you aren’t the only one most medics don’t seem to be aware either ). You will get there but insist on high level of information and never make a decision without it being fully informed consent. This means you absolutely understand where the treatment sits in the protocol best practice and know the outcome possibilities.

[Endohasme]

endo_the_stigma I’m a bit behind you but the initial NHS appointment at the specialist centres look like they go over all of your history from the start. You would need everything you have to inform them of your position.

I’ve started the discussions about going private and it’s £4K for a lap and then £7k plus for any operations so similar to what you’ve been told.

The NHS gynae has confirmed that severe endo can only be treated in the specialist centre and they have to bring in other surgeons if other organs are impacted. Sounds like that is where you are being routed to and the waiting time fits with what I’ve been told.

Minefield!!