How do people know so much about themselves?

[Heloo85]

So, I’ve been waist deep in the NHS for 5 years and still know absolutely nothing! I see on here people are able to describe their cysts, know there blood markers, go into sheer detail of what tests they’ve had, what happened during surgery ect.....

I’ll tell you what I know about me! Absolutely nothing! I have had no test results, my scans are ‘clear’, although I now know that’s a lie... I get stupid comments at ultrasound like you’re bowely, whatever that means! I get the occasional ‘complex’ or ‘very complex’ but that’s about it! I spent 4 or 5 days in the hospital and all they told me was I was going home tomorrow! The newest thing I’ve been told is I’ve been flat out refused an MRI? No idea why, but to be fair, unsurprisingly really, even though I’ve very severe Endo I’m lucky to get an ultrasound. I was told, my last surgery was going to be intermediate surgery.. I think waking up with a catheter full of blood, abdominal drain, with an extended stay in hospital wasn’t exactly intermediate!

So I’m having a bit of a rant! The only thing I know about me is I’m a ‘complex’ case.. And the only reason I know that is because I’ve overheard them discussing me behind my back!.. Never to this day as one Dr explained as to why 🤬

[Fipp]

Hi heloo85

I am sorry to hear how you are feeling so left in the dark. I am at the beginning of my endo journey after a internal scan showed a complex endometriomas of 5 cm detected on my left ovary.

I feel I have been Mis diagnosed for a decade in terms of ibs symptoms and all other ransoms with fibromyalgia/ Cfs/ copd/ mental health even!

I believe now all to be endo related according to what I read.

I have been trying to understand all since then to advocate for my best options as have been noted for an urgent laparoscopy . Yet because the first consultant I saw was quite frankly dismissive , rude , inappropriate I felt to ask for a second opinion which I am still waiting for and now chasing. I found someone near me on here: bsge.org.uk/centre/

Sorry if you know this already , I just thought I would say incase. Wishing you all the best to navigate this all gently enough.

In respect of ‘complex’ I did ask my gp more about this term and she reassured me that this word is just used for a mass / tumour/ fibroid that isn’t showing up as a cyst, cancerous type tumour but more so complex as it is more inline with endometriomas which is fibrous with tissues( most like endo I expect) and blood etc. I’ve also had bulky/ thick uterus described but told not to worry as normal for my age 51. Also the only consultant I have seen so far said we might as well take out your right ovary too to reduce risk of uterus cancer even though I had no high markers in bloods which alarmed me. I just feel now that there is little I can do until I get that lap and they actually see, biop, whatever but need to trust the consultant I get firstly. So one step at a time for me is best before I just consent to chopping bits out of me from diagnosis of 1 scan. I hope you can find a way to keep advocating for yourself gently and find someone you trust and want to be referred too. Ask for terms to be explained as often I think we are alarmed unnecessarily because of the unempathetic approach and personable skills of even female consultants . Good luck but most importantly look after your mental health as this will help us all best navigate through unsupportive feedback.

[Heloo85 in reply to Fipp]

Hi, thanks for your response! I hope you get on better with the NHS than I have up to now! It didn’t get much better after diagnosis for me.. I spent 4+ years on follow up, told ultrasound was clear, was once again told I had all those you was told you had, to now discover my Endo was discovered again on ultrasound 2 years ago, which hasn’t had the correct follow up... As in scans, but I have still had to go to my 3 monthly appointments.

So, I have ultimately caught the NHS out in a lie! I’m pretty sure at this point I’m just a guinea pig, being watched to see what happens! They are behaving very strangely!

There’s only 3 things I know.... I’m complex (no idea what that means), I have stage 4 DIE, and it’s ‘aggressive’.

I have been denied a hysterectomy, or any further surgery, and even after almost dying from sepsis I am being brushed aside to just be followed up.. with 3 monthly consultations, and maybe an ultrasound every 2 years!

It’s bizarre! I hope you have a better experience.. I’m looking at going abroad for treatment! I no longer have any trust in the NHS! Xx

[Moon_maiden]

Rant away, I’m in a similar boat after a hysterectomy in November. The reply from gynae for a couple of things were a doozie. I asked if there was endo on the bowel, he said I’m not a bowel surgeon, he’d told beforehand there would be one. Then He blanked me when I asked about bladder. I asked if there was any endo left and gave me a metaphorical pat on the end and said without gynae bits and not taking HRT any remaining endo will fade. This is complete rubbish with updated research. He runs the BSGE side of things.I requested a copy of the hospital records, very easy to get. I only found one note about MDT and they postponed that at the time as no MRI. There is no second one mentioned.

Asking for records is free as well.

[Heloo85 in reply to Moon_maiden]

Yes, I will be getting notes! It seems your consultant is as dire as mine! Well i say mine, I’ve recently seen 14+ different gynaecologists, believe it or not! I was in A & E, the first one mistook my cervix for my womb. Then each day I saw 3 others by my bed! Some was just trainees, but I was in for complicated PID, an abscessed mass, one suggested I just needed a marina coil.. Forget the fact coils increase the risks of PID, and so does Endo! Another one flat out refused a hysterectomy, because a hysterectomy is ‘last resort’! No idea where last resort is, if it isn’t medication failure and almost death? 🤣

But these people are dire! They’re clearly in the job just for the extortionate pay at the cost of taxpayers! They’re clearly not knowledgeable and the scary thing is they don’t care!

It winds me up! The sad thing is, they’ll now think you’re cured and any further symptoms will be marked down as IBS, fibromyalgia or depression! They wind me up big time! Mess us around for years, just to scratch their heads!

[Moon_maiden in reply to Heloo85]

I had a field day when I left Friday, told the registrar the op wasn’t done under guidelines, they don’t care, he tried to say they do, but I slammed on 🤣 he was scared to death, couldn’t wait to get away. I’m hoping he’ll report it all back.They keep trying to put mine as nerve damage, my intestines feel they are moving as one. I’ve asked to GP for referral elsewhere.

They will regret making me unhappy this week. GMC, CQC, BSGE, hospital, the works.

[Heloo85 in reply to Moon_maiden]

I will be certainly making a massive complaint myself when I get the will to do it, as currently have to give 100% to fight them!

I’m glad your GP is helping you, mines kinda dumped me at my consultant and run! Sick of how many times I’ve told her to send me somewhere else!

Honestly, I’ve no clue what’s going on! One min I’m complex, next min I don’t need an mri! I phoned my consultant to request antibiotics after my gp flat out refused, to get ‘no, you don’t have an infection, you was seen last week, and you don’t have a mass either’. So I’m like f you, get me referred to GUA, which they did as I left them with no choice.. Next day, ultrasound, ‘very’ complex mass, I overheard the sonographer talking to the consultant on call about how thick the walls are.. That they’re the thickest she’d ever seen.. This was the day after my consultant told me I didn’t have a mass and just needed to wait 6 weeks to find out... And I’ve just read thick walls are found in malignancy! Hopefully not, must be be a reason that consultant has forwarded me to MDT, taking tumour markers, instead of sending me back to consultant! Damn, I hate the NHS! Do they even understand what shit they put us through? Do they not know we have enough to deal with living with a chronic disease, as it is 😡

[Moon_maiden in reply to Heloo85]

I hope there isn’t malignancy, have you mentioned that bit to your GP. They really need to speak to the consultant to find out.It’s so awful at times. Ive fought for others to get the right treatment in the past, never thought I’d be doing it for me.

I’ve also contacted one of these medical law companies to see if anything like that is possible, by not following guidelines is a medical no no. The fact I’m not dying probably means they wouldn’t be interested. 😂

For records there should be a form on the hospital website, very easy, you have to upload some ID as well. Same with GP surgery records are free.