How do you get independent medical advice!

[Heloo85]

So the NHS are now protecting themselves! I can’t trust anyone! They’re all f’ing liars!

So 5 years ago I was opened and shut at a private hospital! Sent to tertiary care for ‘priority’ surgery! Obviously didn’t get it!.. Waited in excess of almost a year! Tried on various treatments, then taken into theatre blind for ‘intermediate’ surgery! Turned into major and told will never be rushed into theatre again! Despite being major, it’s wasn’t definitive, and definitely not as definitive as I thought it was going to be! Spent 5 years on 3 monthly consultations! Told I had to start treatment straight away to stop it from coming back? Starting to look like it was never fully removed! In fact they’ve told me it will never be fully removed! And even after a hysterectomy I will still never be cured, and so bad, my hrt is limited!

Anyway, I’ve kicked off royally! First I was told my surgery was going to be within 12 months! Then minimum 2 years! And I’ve watched people in less severe state than me get theirs within months! Not f’ing years! Well mad! So at this point I’ve pointed out all their f’ing really bad mistakes! So now some truth is coming out! Only 4 hospitals in the entire U.K. with the expertise to do my surgery! There’s stage 4 then there’s me! I could end up with a colostomy bag (highly likely at this point) and also a bag to drain my kidneys!

So I have deeply infiltrative Endometriosis which has currently consumed an entire ovary! No ovary is seen independent of this cyst! This ovary is attached to my bowel! And this cyst has eaten through my bowel! It is around my ureters, down the back of my uterus, in between my vagina and anus, in between my uterus and bladder! The WORST places to get Endo, hence why they will never get it all! This is some serious shit!

Last 5 years I have bounced between Zoladex and Combine Pill while being in f’ing agony! I was signed of work straight after the last surgery, but have worked part time since! As I don’t want a life on the dole!

I struggle with my weight, mobility, managing my pain, appetite!.. The last 5 years have been so bad I can’t even put it into words! Not to mention almost dying from sepsis!

At this point, I literally don’t know what to do! My piss is red during my period, so I’m assuming it’s eaten through my ureters! Ffs!

I can’t get no straight answer off any Dr as they’re protecting themselves!.. While still trying to make out is anxiety, IBS and fibromyalgia, the shit they’ve been trying to tell me the last 5 years!

I’m not sure at this point if I need medical advice or legal advice! Honestly!

[Endokita]

Hi Heloo85,

Sorry to read you have had such a terrible time over the last five years. I have no suggestions regarding NHS, however I do see you may benefit from seeking support from endometriosis-uk.org/get-su...

Perhaps re-post without !'s as I found it more challenging to read.

Hope things work out & take care x

[BloomingMarvellous]

Sounds like you need both. Seriously. Dealing with the pain / physical is one thing, dealing with the ineffective care another, dealing with the rage on top a killer.

Am assuming by wholly sticking with NHS list that private is no longer an option. Keep asking for what you need.

[Heloo85 in reply to BloomingMarvellous]

I can’t go private, no, unfortunately, or I would! I’m at the mercy of the NHS, and even then, only 4 hospitals! Burnley who lied to me for 6 years, Manchester, Birmingham or London! The only ones equipped to deal with someone like me supposedly! I have had a run in with the hospital! Pals are involved! Next will be solicitors! And seeing as all this has been caused by the NHS, they can sort out better alternative treatment! Xx

[BloomingMarvellous]

Some people bring these things to their MP’s attention to help both their plight but also underline the dire state of care .