laparoscopy waiting times - how much long... - Endometriosis UK

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laparoscopy waiting times - how much longer?!?

NJG_98 profile image
18 Replies

Hey ladies,

I'm on the waiting list for a laparoscopy and apparently I'm marked as an 'urgent' but have been informed I'll receive a date within the next 6-8 weeks, WHAT?!?!?

Now I've worked in the NHS since I was 16, I've worked for cancer teams and just general radiology admin. I know all about waiting times and an urgent patient shouldn't be waiting more than 4 weeks ideally, so why do I have to wait potentially another 2 months?!?

I know that where I live another hospital under our trust has taken over our theatre lists but this is ridiculous, I waited from January until July to see a gynaecologist, the Gynae dr referred me July 4th for laparoscopy. I then waited from July 4th til September 26th for pre operative assessment which is ridiculous and now I may not get the lap until mid/end November.

I'm in pain everyday, taking 6-8 cocodamols per day, as well as naproxen for lumbar spine pain and my normal pill, I've been gaining weight for no apparent reason other than the fact I have Polycyistic ovaries , which can cause weight gain, I also take the pill which I know can mess with your hormones but I've had no diet or exercise changes that have been drastic, my diet is healthy and balanced and I moderately exercise. I am feeling exhausted every single day due to pain and no one in my family understands this. They think I'm lazy because I'm sleeping a lot more simply because I'm tired and can't handle the pain and now I may have to wait until December? I feel so hopeless and don't know how to speed this process up, should I go private? I can't wait any longer, I've waited ten months just for some sort of answer to be told I have muscle pain in my back and probably have endo, and I just feel so desperate for an end to this...

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18 Replies
Buttoon profile image
Buttoon

I can't answer as not sure why the wait is so long, I am so sorry :'( It took 22 years for them to diagnose me :S I saw my GP at the beginning of this year, then got a gyn. appt. in Feb I think - then had the diagnostic laparoscopy in April. I've just had my second op last week - so I had to wait 6 months. Apparently I have severe endo and I'm in a complete mess (probably as left all those years untreated) and they can't believe I've been suffering all these years, in silence. It wasn't completely in silence though! Been to the doctors loads about it but I "just had period pains" or "maybe it's IBS" etc etc

I really don't know why they keep us waiting for so long, it's so painful :( I really feel for you. Is there any way that you can contact your gyn. office and tell them how severe the pain is and how you can't cope waiting this long? I got a letter yesterday for my outpatient follow up from this op, and it's MArch 2017! Funny really - but guess they want things to settle down and see if it's improved.

NJG_98 profile image
NJG_98 in reply toButtoon

I'm so sorry to hear that you had to wait so many years for a diagnosis! I'm lucky I'm quite young and getting it sorted at 18 but since I was 12 I've been to the GP and A&E, even admitted into hospital for "apendicitis" "pelvic pain" and then my ovary had ruptured, and it took them from 6 years to finally do an ultrasound to diagnose PCOS grr!!

I've contacted the office but they keep saying the same thing, we have lots of other patients to book in, I understand as I've worked in the NHS but 6-8 weeks for someone with suspected severe endo and is on the urgent waiting list seems way too long as all the departmentrs i've worked in have had urgents booked 2-4 weeks... Oh it really is a silly thing..

Wow March is so far away, I'd ring up and double check that's correct! then again some dr's do like to do 6 month follow ups , hope everything is going well for you and you have a quick recovery x

Nicolahunny profile image
Nicolahunny

I was put through as a urgent for my lap as was in so much pain couldn't stand it but I was told 8 to 12 weeks for mine I was seen in October 2014 and got done in January 2015 so much for that being classed as urgent eh I hope u get somewhere as nothing worse than being in so much pain big hugs to u x

NJG_98 profile image
NJG_98 in reply toNicolahunny

It's ridiculous, urgent but making us wait 2 or 3 months... more like can't be bothered! Big hugs to you too :( x

The best thing to do is probably to contact PALS at your hospital and see if they can hurry the situation along. I am being seen at a bsge centre at the moment. I am having my first lap with them next month and it will have been a 14 week wait from first seeing the consultant to having the surgery and that's with severe stage 4 endo.

I can't personally recommend going private having had a horrendous experience with a lap done at a private hospital back in January and it's worth remembering that the gynae who work privately are the same ones as work in the NHS, so you could well end up paying for a lap with a surgeon who isn't skilled enough to treat your endo anyway (as happened to me, though fortunately the lap done privately was NHS funded. I'd have been pretty peed off if I'd paid for it).

I know it's easier said than done, but try not to stress. You ARE coping, even though it doesn't feel like it.

NJG_98 profile image
NJG_98 in reply to

Yes I'm going to call PALS today and just see if there's any way of speeding it up because the pain is too much to deal with, and I'm tired of pumping my body full of medications to ease the pain off, it really does not feel like I am coping, or even really properly living my life, I just get up and try to get on with it but I'm exhausted every day and I have no idea why, and then the tablets make me drowsy... I don't wish for anyone to feel this way..

Hope your lap goes well next month, thank you for your reply and advice on going private, xx

stacynicole profile image
stacynicole

I need an urgent hysterectomy with a bowel surgeon to be included along with my regular surgeon, and I've been told it would be a 6-12 month wait. I'm also in severe pain and am on controlled pain killers. I'm now pursuing private treatment.

NJG_98 profile image
NJG_98 in reply tostacynicole

Oh gosh that sounds awful I'm sorry to hear this, wishing you a speedy recovery and hope you get seen to soon! All the best x

Nicolahunny profile image
Nicolahunny in reply toNJG_98

I'm awaiting to c gynaecology Iv been told be waiting 8 to 12 weeks Iv been back at my doctor cause in unbearable pain and she asked if I was put down as a urgent I said yes she phoned them up and said that a urgent shouldn't wait any more than 6 weeks to been seen but hopefully since my gp phoned them I should hear something soon x

attummi1973 profile image
attummi1973

hi, i worked as a radiographer in the nhs for 16 years so have seen thing from the other side too. i am also waiting for a lap,i finally saw a gynae dr in july at a bsge centre,and still have not even had my preop assessment,phoned them last week and they said november sometime,but as yet have not received any letters. I was only diagnosed 2years ago because of a ruptured ovarian cyst. i was told when i was 19 i had ibs and lived with these symptoms believing it was ibs,im now 43 and realise i was misdiagnosed with ibs and fobbed off all this time. I dont work in the nhs anymore and after always putting my patients first when i did work i have now lost faith in the nhs.

The general gynae that operated on me with the ruptured cyst did nothing to help me since oct 2014,no laps,no pain relief,took 6months to see him then 6months for MRI scan and then finally said he suggested a hysterectomy which i did not want..he finally wrote to me in april of this year to say he would not to a lap and discharged me. i then asked my GP to be referred to a bsge centre and im now here waiting for that. im in pain constantly. wish we didnt have to fight for things all the time, especially when we feel so unwell,hope our laps come through soon...big hug, x

RiaLac profile image
RiaLac

I'm sorry to hear this. Are you at the Oxford hospitals by any chance? I'm having the same problem with the John Radcliffe. Apparently one of the other Oxford hospitals has closed its gynea unit so the John Racliffe has taken on they're gynea patients. I've been waiting since feburary as an urgent patient for surgery and I called yesterday to be told *hopefully* it'll be in the next 6-8 weeks, even though I went for pre op two weeks ago and was told it'd be October. Ive spent the whole of this week off work so far (which I can't afford!) and I'm in so much pain! I've been to dr but they're isn't anything they can do other than give me more painkillers. This'll be my third lap and previously stage 3 found in both surgeries with my ovary fused to bowel wall. I've also tried PALS, utterly useless. They're is not set guideline as how quickly pals have to come back to you so it just goes on and on. Currently in the process of making a formal complaint. The hospitals do not seem to understand how life impacting this is. The lack of compassion and empathy is ridiculous as well. I hugely sympathise and fully feel your pain! Xx

NJG_98 profile image
NJG_98 in reply toRiaLac

Hi RiaLac, yes I'm under the JR for treatment at the moment. It's the Horton that's closed and they're invading our theatre times - pre op gynae nurses own words! She told me I'd be urgent and booked in for Oct - 1st week Nov at the latest but I mean Urgent to me should not be a 6-8 week wait.. I'm in the same situation, I'm on a repeat for Co-codamol and mefenamic acid but I've been advised not to take too many as it can upset the stomach and mefenamic's are usually used around ovulation and periods, I feel so hopeless, luckily I'm not working anymore as I left my job due to relocating to Wales, so I'm currently waiting for the op before I go back into full time work... and the gynae waiting list officers are so not helpful at all! I hope they don't have to go through something like this as it's so frustrating :( Big hugs, hope you get a date soon, who knows we might be in around the same time! xx

RiaLac profile image
RiaLac in reply toNJG_98

It sounds as if we maybe in a very similar time! Let me know if you hear anything, I'll let you know to. Fingers crossed it won't be too much longer! Xx

Emma289 profile image
Emma289

Don't panic I was marked as urgent on August 12th 2016 and I had my op on September 1st 2016 which was amazing for time I was so impressed! They're very on the ball. I think it depends on how busy they are tbh though x

NJG_98 profile image
NJG_98 in reply toEmma289

I doubt I'll get mine that quickly as the waiting list officers can't even be bothered to help with my queries, but thank you lovely I hope you're having a speedy recovery xx

Emma289 profile image
Emma289 in reply toNJG_98

Oh no that's not good 😕 Mine were really good! I hope it doesn't take too long though lovely just keep positive. Yeah I'm all recovered now thank you 😊 it didn't take me that long to recover to be fair xx

Cma89 profile image
Cma89

I requested a lap in august, got referred to a Gyne In January, didn't get my lap until April. The waiting time is ridiculous. If you can afford private I'd suggest that route if they make you wait longer.

X

CE_88_14 profile image
CE_88_14

I luckily get BUPA through work and went private to a specialist locally and I had my consultation 2 weeks after referral and surgery 4 weeks after that but I didn't have to pay for the surgery. What I did have to do was fight with my GP to give me the referral in the first place x

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