Surgery cancelled and moving to new area - Endometriosis UK

Endometriosis UK

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Surgery cancelled and moving to new area

Violet159 profile image
11 Replies

Received a phone call today to say they were cancelling my surgery that was scheduled for Tuesday due to coronavirus. I totally understand the need to do this and I definitely won't be the only one in this situation but I can't help but feel devastated and I've cried all afternoon. I feel almost selfish to be this upset when all this is going on and people are getting really really sick but I got so close to getting an answer and maybe some relief and it's like the rug's been swept from under my feet.

Presumably this outbreak is going to continue to pressure the NHS for a while so it might be some time before they are able to reschedule. My worry is that I'm a student in final year in Edinburgh and the lease on my flat runs out 31st May and I'll have to move back home to Newcastle with my parents for financial reasons. With all this happening I'm thinking it's likely I won't get the surgery before the end of May as the outbreak continues. I'm terrified that this will mean I have to have the op in Newcastle instead and I'll be plonked right at the bottom of their waiting list and the whole thing will have to start again. I was first referred for this surgery in May last year and have had pain every day since November 2018 and I'm getting desperate.

I had asked the secretary a few months ago what would happen if I moved and she said it would probably mean having to have it in Newcastle instead. I'm absolutely fine with waiting longer for the op while the NHS copes with the virus but I couldn't stand starting all this over again.

I don't know if anyone has been in a similar situation or has any idea what might happen or what I could do? Do you think they'd let me keep my place on the Edinburgh list?

11 Replies
Missunsure profile image
Missunsure

This is awful. Like a nightmare. I have a up coming laparoscopy on 6the april and I'm so so worried it hasn't even been cancelled yet & I've cried to my fiance because so worried about this. I really dont wanna carry on with the pain it's becoming unbearable!

I really hope you get a new date soon

Sending love xxx

Violet159 profile image
Violet159 in reply to Missunsure

I really hope they don't cancel your surgery! It seems to depend on the hospital and how they're coping, fingers crossed they won't need to cancel yours too! All this uncertainty really doesn't help does it xx

hltz profile image
hltz

I wanted to change specialists and had to go through the whole referral system again even though I had been referred to a specialist I wanted to change. This meant I had to start all over again which I was devastated about. I would recommend getting the process started sooner if you can, there doesn’t seem to be any loopholes that I could find. I had secretaries emails and I just couldn’t make it happen. I hope that you manage to get this sorted out and get some answers xx

Violet159 profile image
Violet159 in reply to hltz

Ouch that sounds awful! Thanks for the advice, I'll try calling the office on monday to ask, and I guess even if I need to start again it can be done sooner rather than later ☹ xx

Whoisthis profile image
Whoisthis

I’m in the same position, but for others I may of found a loophole.

So I’ve hunted down the surgeons that do excision not ablation, that’s the first thing you need to do to have a good outcome, reduced chances of repeat surgery and if they find endo in weird and wonderful places they have the skills to remove it.

Next I booked a private consultant with the surgeons I wanted, you don’t pay until you’ve been so I booked two and went to the first available, that in itself was life changing, he listened and understood my random pain diary.

Once I’d seen him, the lap is booked - so here’s the loophole it’s 1 month if I pay privately and 3 month NHS. So I know the virus will change this potentially, but if you can afford to see a private consultant they can get you on their list via the NHS sooner.

If you stick with the NHS Please go to a BCGE endo specialist, don’t let a normal NHS gynae surgeon do the lap, it’s a specialist only operation.

Don’t feel your region or location is the tie, find the right surgeon for you first, I’m very lucky to be in hampshire, so a few in Surrey and london.

Oh and lastly private care have payment plans, so you can spread payments over 4/5 years. It’s not ideal but I’ve decided it’s so important to get my life back I can sacrifice other luxuries and life choices to find this money.

Hope that helps someone.

Violet159 profile image
Violet159 in reply to Whoisthis

Thank you for that, that's really interesting! I can't afford private surgery but I could maybe stretch to a consultation as you suggest and go on the NHS list. As I understand it, in scotland you don't have so much choice which hospital/surgeon you see but in England you can choose so maybe the move back might be a blessing in disguise for me.

That's certainly very helpful, thank you! Xx

Whoisthis profile image
Whoisthis in reply to Violet159

Fingers crossed you can get the help you need sooner, I don’t know the Scottish system at all, but yes this could be a blessing, it gives you time to look at excision vs ablation and find the best surgeon in your area thy you can trust to investigate and operate. Xx

Whoisthis profile image
Whoisthis in reply to Violet159

bsge.org.uk/endometriosis-c...

It’s BSGE!! Sorry I was slightly drunk on painkillers and got my letters the wrong way around

Glittery profile image
Glittery

It’s a horrible situation. I’m booked for my first lap on 3 April and am now expecting it to be cancelled. It’s taken me almost ten years to get to this point as gps just wouldn’t take my pain seriously. It’s been a year since one finally did and I can’t believe this is all happening and it looks like it’ll be even longer before I get answers now. I really feel for you with the move coming up too to add to your uncertainty. Sorry I don’t have anything more helpful to add.

To Whoisthis, how did you find which surgeons did excision? I’ve looked on the BCGE website but could only find centres?

Violet159 profile image
Violet159 in reply to Glittery

I'm really sorry you're in this situation too ☹ it sucks but at least we're not alone in this xx

Whoisthis profile image
Whoisthis in reply to Glittery

Hi, am I allowed to name surgeons here? I looked across all of the BMI, Nuffield and spire websites .

I won’t name just incase but there are two operating out of frimley park, and Qah Southampton also is recommended.

Find the centres, look at the names and then google the individuals.

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