So disappointed!: Was due to have my... - Endometriosis UK

Endometriosis UK

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So disappointed!

vicner profile image
9 Replies

Was due to have my hysterectomy today! It didnt happen, I have been sent home and told I will have to wait for another date. No-one is able to tell me when I am likely to have this op. I really had my hopes holding on this and feel so let down by the system AGAIN!!! I dont want sympathy I just wanted to vent to people who may understand, because I am surrounded by family and friends who think they understand my daily pain and how this upset I am but none of them have to deal with daily pain or nhs bureaucracy of what constitutes emergency. ( I know that sounds selfish! sorry).

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vicner profile image
vicner
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9 Replies
worth71 profile image
worth71

i had a consultant appointment today and i've ranted too lol - so sorry you didnt get your op, they dont realise we have to syke ourselves up for this and when it doesnt happen, well, its awful xx

vicner profile image
vicner

Not to mention the organisation required for the kids, dogs, house for the next god knows how many weeks. Friends have taken holiday days to help look after me in the day... My ex-husband has given up his room in the shared house and moved in to look after the kids on the night (now im stuck with him until after i actually have the op).

worth71 profile image
worth71

I know, they have no concept of what this means to us as people, to them we are one of thousands, we really are just a hospital/patient number, to us what we have is life changing, to them it's just a list of symptoms, to us arranging our life around a major op is huge, to them it's just a list of people who may or may not get their op - I feel for you I really do, I would love these docs to live our pain for one day, would be different then xx

maeline profile image
maeline

I understand I have been there too for laps .. I am really sorry . Keep positive and strong xx

Bexyrich profile image
Bexyrich

I have also been let down and seem to be continuously let down by the system. I had one of my op's cancelled not to mention numerous appointments. I saw my consultant 5 weeks ago and i was meant to be being referred to the pain clinic and to see a urologist, i am still waiting. I am so sorry to rant on your post, i am thinking of you and i hope your new appointment comes through very soon.xxx

vicner profile image
vicner

Feel free, rant away. I love this place cause we can just rant if we need to and it reminds us we are not alone. I waited 7 months for pain clinic originally And they weren't much use then. Hope you get sorted soon xx

wp22 profile image
wp22

Me too,

I have been let down, my appointment for my lap has been changed twice up to now and I have to wait another 2 months and I am expecting it to be cancelled again because nothing with the NHS goes right for me. Like you vicner have had to re-arrange everything including other people having to re-arrange things too. I have missed out on a week-end away plus some other things. I am disgusted when I spoke to secretary's refusing responsibility of booking me in twice when surgeon away on his hols, one telling me I am priority at the top of the list then a week later when I phoned her she couldn't even remember speaking to me. If I wasn't going through all this and someone was telling me the same thing well I guess I wouldn't believe it because really its comical, but its not funny X

wotley profile image
wotley

I am really sorry you have had this happen to you, don't give up hope it will happen eventually, unfortunately the NHS is over stretched so it does have to prioritise and although they do recognise your pain as you wouldn't be having the op some conditions are life threatening so they have to take priority and in some hospitals this happens more often than others. I work for the NHS and for us nurses no one is just a number or just an op we hate having to cancel someone as most of us know what it's like to be a patient also, some of us more often patient than staff. If you don't get a service you need complain because if it is a fault in the service provided things won't change unless complaints are made, I hope they explained the reason for your cancellation also.

My op was nearly delayed past my waiting time and this could have meant waiting years in my Trust for the op which I desperately needed due to ending up off sick two to three weeks a month, so I rang up waiting list and complained about my treatment (there are little/no benefits to giving your life to the NHS like people think there are). I was lucky they sorted me a date out in time, it costs the NHS money cancelling ops so they will try to rearrange it asap, especially once you go over the 18 week waiting time, another option is talk to your consultant and see if they do private work, in some areas there is the option using choose and book to have your op in a private hospital through the NHS. What I would advise about this though is stay under your consultant as you know they will look after you and they know you, don't just have any one, look up the reviews for the hospital before committing to it as private definitely doesn't mean better care, it all looks good on the surface but remember they make money and the NHS doesn't and if the NHS can't and doesn't pay it's staff half as much as most private hospitals how do they achieve the profits?. I hope this helps and that you get your op speedily and on your way to recovery soon.

Ps. Make sure you document phone calls writing their names down, bug them they will soon get fed up and try sort something out, I'm sure I have a black mark against my name in waiting list but I got my op and on my way to getting my life back so I got what I needed.

vicner profile image
vicner

Thank you all for your kind words. I realise this is not the fault of the nurses or he consultant, it's just one if those things that happen in this over stretched service. All the times. Have been sat in a bed waiting for diagnosis how many ops have been cancelled. I believe there should be some sort of reform to stop this from happening again. the day after my op was cancelled a close friend in a different hospital was downed up ready for her op when it too was cancelled! I dont know what the answer is but I think there does have to be one. Xx

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