For those following my struggle! I had my consultation today and I’m now proceeding to a hysterectomy!

[Heloo85]

Well it was a strange one, because my consultant again knew very little! They are now requesting the MRI from Airedale (where I went to A & E) and running another one in the next 2 weeks, and then it’s book in for hysterectomy + one ovary! To be fair, I don’t know if he’s taking both! No idea! It’s now bish, bash, bosh! My cancer markers threw up nothing, which is good, but pathology won’t be know until everything’s been through histology! So, 35, hysterectomy! I’m not thinking this will in anyway be a cure, but if it takes me back up a notch as to how I’m feeling now, which is knocking on heavens door, I’ll be happy!

[Moon_maiden]

A little bit of good news 🙂 Do you feel hysterectomy is the best way forward? It’s not any easy decision.

I saw gynae last week, he didn’t have any notes, lucky I took the discharge and letter with me 🤣

Will they be excising endo at the same time?

I’d been told last year they were trying to arrange the MDT meeting, turns out, they never had one, so there was never going to be a bowel surgeon around. I was never told that part, make sure you get it all down on paper and question. I realise now when I asked questions I wasn’t given the full info.

[Heloo85 in reply to Moon_maiden]

To be fair, my consultation happened very fast.. I asked for a hysterectomy 2 weeks ago when I saw his colleague, who replied with ‘oh god no, we only give hysterectomies as a last resort’, now after the MDT has seen my scan, have gone yep, get her in and get it whipped out! 🤣! It was a shock to be fair, I expected the ovary to go, but not the womb! I’m happy about it! I won’t miss monthly periods! Although I don’t have children, I don’t plan on having them anyway!

They have explained it may not make a difference to my quality of life 😭! But it’s worth a shot! Nothing ventured, nothing gained!

As for excising endometriosis I did tell him I have ‘nodules’ on MRI that are deep infiltrating! He will likely have to take them as they’re 1cm! But whether it will all be done in one surgery? I don’t know! My hysterectomy ain’t going to be easy because my wombs glued down!

You need to just keep hounding them! Ring your consultant secretary every 5 mins! Keep pushing! If need be keep going to A & E and push til something is done! Xx

[Moon_maiden in reply to Heloo85]

I felt very similar with having a hysterectomy, haven’t had children and at an age menopause should have kicked in.I’ve made an official complaint this week. I did receive a letter confirming receipt very quickly. It said allow up to three months 🙄, needless to say Ive emailed and said it has to be much quicker or will involve CQC, GMC etc 🤣 it’s not an idle threat either. I’ve done it before for someone else, worked like a dream 😂

[Heloo85 in reply to Moon_maiden]

Honestly, the thought of dealing with the NHS makes me sick! The stress they cause is enough to cause cancer in itself!.. I emailed a complaint through too, then just went mental at them too! I think they thought ‘batsh*t crazy’ 🤣! I have lost it with my GP, this time I really have gone mental! I am so sick of being fobbed off! Made to feel like it’s all in my head! Or I’m a hyperchondriac! I mean, I don’t know how many times I have to go to them with pre-cancers, constant infections, pain, disease before they do something that is actually helpful! Xx

[Moon_maiden in reply to Heloo85]

It’s crazy it has to get to those stages, if they were honest in the first place, half the crap that happens wouldn’t. I spent 2019 going to GP numerous times without anything like a diagnosis, I’ve gone ballistic at GP’s several times 😂 they won’t give me a copy of a pain clinic initial question as the reply was they would refer to psychologist and physio. I really chewed their ears off 🤣 I’d already paid to see consultant by that time, as it was taking them forever.

It looks like you’ll have op quite quickly which is good in a way. Definitely ask about endo at the same time, more ops can mean more adhesions. That’s why I told consultant that everything needs to be done in one a few months prior.

Went to A&E last week for intravenous painkillers for some relief, didn’t get any, just the same stuff and a pointless CT scan.

[Heloo85 in reply to Moon_maiden]

It’s just the same..... My first surgery, after being fobbed off at physiotherapist, told it was all in my head, IBS, ignored ect since 16 til I got a pelvic infection that warranted investigation, although that’s another long story of fobbed off at A & E with sepsis markers, gp fobbing me off, only person willing to treat me was GUM clinic even though I didn’t, and it turned out I definitely didn’t, anyway I can’t go into whole story, makes me mad! My very first surgery, the only one I’ve had to date, was bloody MAJOR surgery! And all they removed was on Fallopian tube! I dread to think what this surgery will be, because once again, I was ignored, fobbed off to physio told it was in my head, to end up with a massive infection that wasn’t an STI! 🤣! History literally repeated itself! Do they not realise the damage those years of them sitting back twiddling thumbs cause? Health wise my health is poor! I’m constantly battling something because my body cannot cope with the level of inflammation and pain this disease causes! It definitely should be taken more seriously! Xx

[Moon_maiden in reply to Heloo85]

I reckon the first thing they learn is how to fob off a patient, with repeats every term 🤣, they all seem pretty practiced at it. Other forums for different conditions get the same response, especially gynae stuff. One day I’ll ask the GP why it happens, it’ll be down to money, but they waste so much in stupid tests and delays.

I really hope you don’t wait long, I seem to live on hope at the moment.

Bodies are tough, but this condition definitely takes its toll.

With luck all the parliamentary work being organised knowledge and common sense will win 🙂

[Heloo85 in reply to Moon_maiden]

They are definitely taught the true art of fobbing off! I have severe disease, and in all the years since before and after diagnosis, have I ever had an mri! I was supposed to be on consultations for ‘follow up’ and I only ever received ultrasound, the least likely thing to pick up Endo or adhesions, and never, until the sepsis and now, an MRI!

By the sounds of it, and how quickly they have now moved since the last scan a week ago, I’m assuming I’ll be in fast... But that’s not to say it’s true! It’s gynea, anything can happen! Knowing my luck and the hospital I’m at, I’ll have my MRI and they’ll change their mind and do a watch and see. 🤣

I’m 35, I’ve already had 3 gynaecological pre-cancers! 2019 I had to have vulvar excision of a relatively large pre-cancerous legion! It started off as a small lump in June, by my surgery in November it was a good inch wide in each direction!

I wish I was a bloke 🤣! Cuz I’m done with this!

Xx

[Moon_maiden in reply to Heloo85]

It is so crazy, you’ve gone through way too much, you should have been treated far more professionally. It goes to show that they really don’t have a clue exactly what they are treating and just seem to guess.

Keep us updated when you get your MRI, op, etc. There is no way any of your treatment should be delayed. The excuses with covid are getting ridiculous. If consultants gave a crap they would offer their private time to play catch up with consultations.

[AllthatGlitters]

That’s great, do what is best for you.That’s the path I am going down. Sometimes you have no other choice.

X

[Heloo85 in reply to AllthatGlitters]

Fingers crossed it’s the answer for both of us! Xx

[DolphinJ]

Hoping it works out as well as it can for your and you feel in better health afterwards xxx