I am just fuming.. Like mad, fuming! Long story short.. Diagnosed with stage 4 DIE aggressive Endo back in 2015/2016! Had excision surgery back end of 2016! The surgery was the biggest mistake, it left me worse than I was before.. So anyway.. I have stayed under BSGE for 4 years on 3 monthly consultations, getting an ultrasound every few months! So about 2 years ago I started to lose my ability to walk! I was being outpaced by pensioners! They pain and weakness was unreal! Supposedly my ultrasound were clear! So I spent 2 years driving myself insane trying to figure out what was leading me to lose my mobility... My gynea forwarded me to pain clinic, while he denied I had active Endo, and that it wasn’t the cause of my declining mobility! I tried every avenue for answers including neurology! Fast forward 10 weeks ago I almost died from a pelvic infection and complex mass that had abscessed.. I subsequently had active Endo on MRI, so chose my Endo specialist, who has been nothing but hard work, dismissive and made me out to be a liar... Anyway I got a referral to GAU, who did an ultrasound... The sonographer says ‘I see you had an ultrasound with us back in 2019 that showed a cyst’... Eeem my consultant told me that was ‘clear’! Caught the 🤬 out in a lie! And the best bit?.. After sitting back for 4 years and watching my health decline, he was just about to fob me off onto 6 monthly follow ups, to then discharge me while he knew I had active Endo! Wtf is the point of these specialists!? I’m so mad!
So I am fuming... : I am just fuming.. Like... - Endometriosis UK
So I am fuming...
Id be putting in a lawsuit if i was you. Bang out of order. Im so sorry for what your going through. I know what its like losing your mobility its so detrimental to your life. He needs stripping of his so called expertise xx
I also don't believe these so called specialists have our best interests at heart. I'm so sorry you've gone through that. My GP thinks I have ovarian cysts due to my new pain, but specialist could care less. I'm on a very long waiting list to be seen. I'm guessing I'll need to go to A&E before I ever get a date for treatment....
I’m not taking it lying down anymore! Do what I’m doing! Just keep hounding them! Last Thursday he blank refused antibiotics and told me I didn’t have a mass.. Friday at GAU I was given antibiotics, a referral to MDT and they’re now checking my blood for cancer, because I have a very complex mass on my left ovary, the day after my consultant denied it again! I swear, I have gone mental! I will be putting in a massive complaint! Utilise GAU & A & E! Make it out to be worse than it is if you have too Xx
Contact the hospital complaints, not PALS, there will be a separate page/email on their website. Maybe let the Secretary know first if you are going to complain. Chances are they will let the consultant know and you’ll get a call back. They will not want any complaints about them. That’s my plan anyway 🤣 See how far I have to take things. I will take it so much further if need be!
Good luck, it’s such a crap system at times
Sounds awful - I suggest your report as people are saying, get your GP to refer you else where - look for another BsGe reach out to them (secretary and referral request) and take it from there!
If you don't get anywhere via the complaints process then look into legal action. Don't wait too long as there's a 3 year limit. Write everything down, date order what happened and how it's affected you. Also request a copy of your medical records, hotel useful to highlight info in case you forget. Was too late for me but want to help others where I can as we shouldn't be gaslighted, endo is no joke.
What do you mean by a 3 year limit? x
She means 3 year limit to take legal action x
I'm sorry I still don't know what that means? I would like to understand more because I'm thinking about taking legal action x
If you want to take legal action against the NHS you have to do it before 3 years are up. So you've got 3,years from the date of the incident. Get in touch with a solicitor they'll be able to advise you further x
I understand now, thanks so much for taking the time out to explain xx
Good luck x
You ain’t joking! I had a massive pelvic infection.. Was hospitalised! I went to see the gynea and requested a hysterectomy! I got told I’d likely just had a bad case of the clap, there was nothing more too it, and there was no way on earth I would get one as that’s ‘last resort’.... I forced my way to GAU, got a referral to MDT, to be told I needed a hysterectomy 2 weeks after being refused one?
I think they just like taking the pee! I was late diagnosed anyway! My very first lap was major surgery! My second, which I’ve been needing a while is now everything has to go at 35! So much for not needing one? Grr! How do they get away with it! This disease is no joke! It destroys your life! Xx
You can complain to PALS but first of all, your health comes first. Ask your GP to refer you to another hospital/BSGE Centre for a 2nd opinion. You are legally entitled to be referred anywhere in England, your GP can't refuse, it is in the NICE Guidelines. Do your research first, look which specialist you think would be best for you. Alternatively, to speed up the process, you could get the first appointment as a private patient, you will get a faster appointment and then at the consultation, ask the consultant if he could carry on with your care at his BSGE under the NHS. Make sure you are accompanied at the appointment with someone close to you who has your interest at heart, often 2 ears are better than 1! If you complain, be prepared to hear that they can't deal with the complain due to Covid, they will do everything to delay your complaint in the hope that you forget/give up, this is the usual tactic.
Take good care of yourself first. x
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Fuming!
No endo found - so why am I upset?
My laproscopy has been cancelled and I am so miserable and need to vent.
Am I being irresponsible?
So, I got my medical records and they make for interesting reading...I am beyond angry.
I have no idea on what I am doing
I am so upset and don’t know where to go from here…
I am just being selfish 
Advice needed - Am I losing my mind 
