How far in advance do people know a date ... - Endometriosis UK

Endometriosis UK

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How far in advance do people know a date for their laparoscopy? UK NHS

TillyH
TillyH

I know this is a bit of a hard one to answer - as some hospitals are quicker, some waiting lists are shorter, etc!

But I was just wondering how far in advance people found out a date for their lap?

E.g. did you get a letter 2 weeks before, a few months before, etc?

My work are hugely supportive of time off for mental and physical well-being but I want to be able to give them an idea of how short notice it all might be for recovery time off.

17 Replies

Hi I’m sorry I can’t help but I’m in same position too have long have you been waiting for a date?

TillyH
TillyH in reply to Adeno2020

Oh not long at all - I’ve only recently had my appointment with a gynae when he said they’ll book me in and send me an appointment.

Although that was super quick from referral date - as I managed to get an NHS slot at a local private hospital that takes a small number of NHS consultations for certain medical units.

I’d just really like to be able to give my work as much information moving forward. They won’t mind at all, but I have a lot of client work so I’m conscious I want to be organised!

How long have you been waiting?

Adeno2020
Adeno2020 in reply to TillyH

Yes I see I think also depends where your are for example I’m in Birmingham so a big busy city. I was only told yesterday I was being out on the waiting list I’m so I’m aaare I still have a while to wait

Have you had a lap before ? I’ve had one to remove a cyst but not to look for endo. I’m now so worried they don’t find anything ! Tell me this is normal please

TillyH
TillyH in reply to Adeno2020

I’ve never had one before.

I’ve had an internal ultrasound but that was clear - so I was worried the consultant would tell me to just go back to my GP for pain management.

But he reviewed my symptoms, etc and agreed that we should do a lap to investigate and see if he can find anything!

He has a special interest in endometriosis and is performing the lap so I feel more at ease. I am worried they won’t find anything too!

Adeno2020
Adeno2020 in reply to TillyH

Yeah my scans come back clear apart from cysts.. although the other week I had 3 ultrasound scans within 3 days all different results! I’ve been told on paper they’re adamant I’ve got it but need to be opened up to confirm that. But I still am so worried wish you all the best

Heloo85
Heloo85 in reply to TillyH

Because it’s in a Private clinic and diagnostic, it’ll likely happen very quickly! Mine was within a month of my first appointment, 5 years ago! Recovery is 2 weeks! Xx

TillyH
TillyH in reply to Heloo85

I’m hoping it’s this quick! As it’s at a private hospital everything else seems to have been quicker so far - so I’m hoping it’s the same with this waiting list.

I’ve already told work I’ll have a minimum of 1 week off completely / I work at a desk at home currently and they are very flexible, so the second week I will likely try to work a few hours to catch up on a few emails near the end of the week and rest for the other days.

Heloo85
Heloo85 in reply to TillyH

You probably will be up and at them quite fast! I didn’t take any time off for diagnostic lap! If you have mild disease you will be treated during your lap! If it’s severe you will be referred on to a BSGE! They don’t work fast those people, unfortunately!

Private is brilliant! They are so fast! They will also give you medical treatment like Zoladex, if they feel it’s necessary! Just because they ain’t ‘BSGE’ doesn’t mean they’re not knowledgeable! The one I had was fantastic, and it’s actually the same hospital my now BSGE consultant works at! And I’d have rather stayed under him than my now BSGE consultant xx

TillyH
TillyH in reply to Heloo85

It’s NHS treatment but at a local private hospital - and even though I’m not a private patient the service is already SO different!!

Heloo85
Heloo85 in reply to TillyH

No, I know, I did the same! Even though it’s funded via the NHS they treat you like private patients! I did the exact same as you! From start to finish I was diagnosed within 3 months! If not sooner than that! It was at BSGE I got problems, waiting a year for priority surgery, kept on follow up to almost die from sepsis, to now put down for a lap, which will likely be months away! Now on more Zoladex! Wahooo! Xx

TillyH
TillyH in reply to Heloo85

I’ve tried so many of the stronger painkillers and all of them make me feel sick after 3 weeks of taking them - so annoying! I sort of have to rotate now 😂

Haven’t had zoladex though hahah.

Did you have an ultrasound etc prior? I’m worried that as I’ve had 2 that are clear that they won’t find anything! I know that an ultrasound doesn’t show endo in a lot of cases, but there’s always this panic that they’re going to think I’m just making all this pain up! (Although as if we would 🙄)

Heloo85
Heloo85 in reply to TillyH

Don’t worry about that, they think that even if they do find Endo! 🤣

I had an ultrasound via GP, had a non-STI infection, a massive one! It was that, that sent me on to gynea! I literally just had one appointment and put straight down for lap.

My ultrasound, although I’m not sure if my GP sent it with my referral showed ‘something’ as I had a massive infection, as far as I’m aware, it didn’t show ‘Endo’. My lap lasted 5 whole minutes as I was severe! He didn’t even stick round for photos! I went back for my follow up 2 weeks later! He himself gave me my first Zoladex, unlike a nurse you’d get on NHS, and told me he’d referr me to BSGE! So I wouldn’t be worried about your ultrasound! It self only shows anything! Most of the pain, and the life threatening/severe aspect, is more to do with the damage in which Endo has caused, than Endo itself! The adhesions!

And I have DIE, it is stage 4, and most of my ultrasounds have been clear! Xx

TillyH
TillyH in reply to Heloo85

That’s all very reassuring!

It makes me laugh how easy it was for the gynae to give me a lap.

My doctor refused for months and months to process a referral, saying he agrees it’s endo and is treating it so (with hormones) and so not to worry about a referral.

So I complained, got my referral and within 15 minutes the gynaecologist has said he’ll bring me in for a lap! 🤣 easy as that!! And after my GP said they probably won’t bother as my pain is being managed hormonally.

Heloo85
Heloo85 in reply to TillyH

It wouldn’t have been that simple if you went to an NHS hospital! Lol. Yes, my treatment started off like yours! It was all so simple, it was amazing! Then when I went BSGE it all went downhill very fast! Very fast! My referral was not for a diagnosis, I needed surgery and I needed it fast, because my Fallopian tube was wrapped around my bowel suspending it! It took 6 months to get my first appointment! I was told to go on the pill as at this point I’d finished Zoladex! And that was it, and I was left scratching my head as I had been referred for surgery, not to be fobbed off! I went back for another appointment 3 months later, to again, nothing! Then sent away again for another 3 months, but this time he ‘huffed and puffed’ as at this point I’m like ‘hello, I was sent here for surgery not to be put on pill?’ And he really reluctantly agreed to surgery! And I mean really reluctantly! He more or less said ‘well if I have too’ and I was like wtf? It took 12 months from first appointment to getting my lap! I was put down for ‘intermediate’ surgery! Of course, at this point, it ended up major! And to be fair, my experience with the NHS hasn’t improved since! If I could’ve stayed under that consultant at the private clinic, I really would’ve done! Xx

June_Viola
June_Viola in reply to Adeno2020

Things went quickly for me. I was in A&E for uncontrollable pain twice in one weekend, the consultant thought it was likely endometriosis based on my history & ultrasound, and then a cancellation came up on their day surgery list. So, I was in A&E twice, then in day surgery 4-6 days later. I know that was exceptional, and I was very lucky.

Adeno2020
Adeno2020 in reply to June_Viola

Omg that’s soo lucky! I was in hospital I went in 3 times then was admitted always put pain down to endo even though I don’t have diagnosis but finally I’m on the waiting list I hope it’s not too long till I have it x hope your all good now after having it

Hey I was added to the surgery list for a laparoscopy and hysteroscopy in September 2020. I was originally added as urgent (priority 2) where they ‘aim’ to treat you within 3 months, naturally because of the second wave this has been delayed, I was then admitted to hospital for a week with a severe kidney infection and sepisis in December and due to this have been upgraded to the highest priority for surgery (priority 3) in January 2021. My area was badly impacted by Covid so I’m expecting further delays whilst they catch back up.

If you are added to the list on your apt, I’d recommend asking how they are categorising your urgency and to ask for a rough estimate on the wait time aligned to you, I hope this helps. Please feel free to PM me if you have any questions and I’ll always try to help. X

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