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Endometriosis UK
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NHS waiting time for lap... 21 weeks for a date?!

Hello,

I called the consultants secretary to see if they had a date for me yet, I saw him at the end of March, she told me that someone has been waiting 21 weeks for a date, let alone for the procedure.

Is this the going waiting times at the moment?!? It's very frustrating..

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Hi Katy ... always good to chase consultants Secretary ... also, try ringing appointments and ask to be put in cancellation list ... do hope you hear quickly 😊

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Thank you for your reply, she did offer to put me on the cancellation list which i did. I will occasionally call the secretary, I can't believe one poor lady has been waiting that long.. seems mad! Thank you :) x

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I’m in a similar boat. I’m past the 18 week limit the NHS set themselves and when I asked about timeframes for a date, I was laughed at and told I’m only just breaching the 18wk point where some ladies have been waiting 30 weeks. It’s honestly ridiculous

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It really is awful, I’m sorry you’re having to wait too, I can’t believe how crap it is! Where are you if you don’t mind me asking? Xx

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It’s terrible - I’m on my second week of being signed off work for 4 weeks because my body isn’t coping but when you tell the people at the hospital that, they don’t care. I’m in Colchester. You? Xx

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Wow that’s awful, you poor thing :( it really is mentally draining. Do you have the coil or anything? I’m in Cornwall xx

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I’ve been taking the combined pill for 10 months-ish. Not entirely sure how long. When I have my diagnostic lap, they plan on putting the Mirena in. Until then, I’m stuck trying to cope on painkillers and heat - though the latter isn’t happening at the moment because extra heat is making me more nauseous 🤷🏻‍♀️ Ugh... xx

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It’s so crap isn’t it! That’s how I feel at the moment.. stuck! I’m going to speak to my gp tomorrow and see if I can be referred elsewhere. Worth a try. I don’t like heat either! I have recently started turmeric and omega fish oil capsules which hopefully will help will the pain in a couple of weeks xx

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Sadly waiting times across uk are rubbish. I’ve been waiting 9 months for my hysterectomy. The waiting is soul destroying as life feels like it’s on hold. I gave up my job as I was struggling and thought it would be only a few months. I now know the waiting list lady well and she’s supportive but stuck as nothing she can do.

I hope it’s not too long for you x

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Hey, I’m sorry to hear you’ve been waiting so long :( a hysterectomy too, your anxiety must be awful. How long have you been diagnosed for? Guessing no treatment has been overly successful? Where are you if you don’t mind me asking? Thank you for your reply, horrible I know but it’s nice to know I’m not alone. Hope you have some good news soon xx

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My anxiety goes up and down but it’s taken it’s toll on me! I’ve had endo since I was in my 20’s but no one believed me and diagnosed finally when I went for IVF at 34! Things were really bad at that point. I’ve sadly tried years of pills, coils and zoladex (just finished that one which was the best but not a long term solution). I need a bowel resection & I cant have children after a nasty ectopic and I’m 42 so get it all out!! I’m in Surrey and my centre is St Peters in chertsey. I’ve had 2 consultants and both have been lovely and guided me.

Best wishes with your journey

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Waiting times in this country are a joke, I waited 43 weeks for an urgent consultation with the endo specalist in Aberdeen, now I'm being told I've got a 45-50 week wait for a diagnostic lap.

So yeah, I like, hate to be the one to say this but 21 weeks isn't that bad for a UK endo wait list to be honest. From referal to diagnostic lap I will have waited almost two years.

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That’s awful, how do you mentally cope with that? Well I am sorry for moaning about the wait here. It’s a joke! Jesus, I hope you hear something real soon x

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I didn't I'm on a sky high dose of gabapentin to try and manage the depression and anxiety that comes along with the pain. I don't know I just....I feel like we're all getting screwed here. There's no one here that wins. If you're waiting 21 or 60 weeks we're all not getting the treatment we deserve.

I almost find myself exasperated by the whole thing, everyones going on about raising awareness and specalist centers. Our specalist center will be moving into a brand new state of the art hospital in Aberdeen next year. Only it doesn't increase capacity its the same number of surgeons and nurses, we wont get seen any faster. It's crap all around.

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Hi there!

I had the same problem last year. I was told false information that I would receive a letter within six months and that I would have my operation by Christmas’18. I had to call up, only to be mortified that I was told false information. I was meant to wait 42 WEEKS FOR A DATE/LETTER and a FURTHER 6-7 MONTHS FOR THE LAP! Obviously we couldn’t do much, I mean the NHS is under pressure by a lot! But thankfully, Jan/Feb this year we got a call to say that they will be expecting me in for my lap within the next 2 weeks (however this got cancelled due to the snow so I was rescheduled in for March) I guess their time frame is like a guide, especially if they were to prioritise patients based on age, how urgent the operation is, what’s it for etc. I have only JUST turned 18 and this was my second operation! I hope you receive a closer date for your operation to get this over and done with! X

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Hey thanks for replying, that’s really rubbish.. 6/7 months!! Did you have to wait like that for your first op? Yes I know, I feel bad for moaning, nhs is under a lot of pressure and easy to forget how lucky we are but still hard to not feel sorry for yourself sometimes. You are so young, what a shitty thing to deal with at your age, I feel bad for whinging now ha! Thank you for replying, I hope your second op is a success and you are feeling better 😊 xx

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I have been waiting since December for a hysterectomy and a couple of other bits. Was told last week it was likely to be July now, they originally told me 2/3 months so my life has been on hold waiting.

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It’s mad so many people are suffering, thank you for replying. I really hope you get yourself sorted in July xx

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I waited 13 months for mine x

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Where are you if you don’t mind me asking? It’s crazy!! Hope you’re doing okay since xx

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I’m in Hull . Yes it was awful they sent me letters of apologises saying it was a longer than normal waiting time and they apologised etc etc but ultimately it wasn’t good enough. I had the operation on Tuesday so still in bed recovering. They found a patch of endometriosis on my pelvis. I’m ok just struggling with non-existent aftercare but getting some great advice from people on here and hoping to get some answers at a GP appt I’ve made for next week 😔 . Hope you get sorted really soon x

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Do you see an endometriosis specialist? Did they excise that patch from you? Thank god for this forum, it’s been amazing for me, little pick me ups and great advice from amazing women! I hope your GP can give you the answers you need. Let me know how you get on xx

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No I was referred from my GP to a gynaecologist and then they decided I was a good enough case for a laparoscopy ( merely because they’ve been pieing me off the last 6 years saying it was my IBS ) and then it went from there. The endo was in my pelvis and was considered a mild patch which I think is stage 2. The nurse on the ward gave me a specialist endometriosis nurses number and she has just rang me back which was a HUGE relief and she was really really helpful. Yes I agree it feels really emotional but amazing to share something with some many other people. Keep me posted too won’t you , here if you need to go through anything xx

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This sounds about right, I ended up going private because of the waiting times :(

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I’ve been looking into going private, looking at around £6k for lap with treatment.. I wish I had the option right now! How was your experience going private? X

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Yeah it cost around £6000 with specialist costs then all the hospitality costs, I was lucky my insurance covered it so I only had to pay around £800. It was okay, my specialist was amazing but the hospital itself wasn't very good but it made up for it that the specialist was so good

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My work medical insurance ruled me out due to having bad cells removed from my cervix 3 years ago.. any excuse ha. Well I’m glad you saw an amazing specialist, must have made you feel so much better ☺️ Xx

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The procedure will probably be close to when you do find out, if it’s any consolation. For my first lap, I was on the waiting list for 24 weeks and got a call saying “is next week ok?” I had written 1 week’s notice required on the surgical assessment form and it was exactly 7 days.

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Thank you for your reply, ahh that’s handy to know. I may request the same if I am lucky enough to get a cancellation date 🤞🏼 Thank you ☺️ Xx

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I had a hysterectomy recently which ended up being urgent after I had two haemorrhages. So, 'lucky' me, I got it within a week ;0) I was aiming for a private one later in the year due to having been fobbed off from seeing a specific consultant and having previously experienced multiple cancellations with the NHS due to a lack of gynae beds for another procedure. Private hospital wouldn't have me after the haemorrhages... Whilst I was in I met someone who had waited 9 months for a hysterectomy. In addition, the gynae dept of the Oxfordshire trust is currently refusing referrals from GPs for 3 months for anything other than cancer / fertility treatment due to the size of their waiting list. People are currently being directed out of county! NB - after the first haemorrhage they increased my meds and sent me home saying I'd been put down for an 'urgent' hysterectomy but they couldn't actually give me a date. Said if it happened again it would become more 'urgent'. It happened again less than 24 hours after they sent me home! Wasn't the best.

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Hey, that’s horrific... what a sad state of affairs! Is there anyway you can have the procedure elsewhere? I am sorry you having such a terrible time! You must be terrified:( I hope they get you sorted soon xx

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I was waiting 9 months before I got my lap but yeah depends on what area you live in, the waiting times can be very long. If you ask to be put on the cancellation list or contact PALS they may be able to help if things get really unbearable xxx

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I'm so sorry to hear about your waiting time! It must be so frustrating to have your life on hold. I got mine within 2 months, but it wasn't with an endo specialist. I suppose that goes some way towards making up for being fobbed off for 17 years. Strangely, I'm due to have nose surgery this year at the same hospital as well, I was told it would be by September, but I got a letter through the door while I was recovering from my lap to say it's happening in June! Finally, living in Wolverhampton is paying off 😂

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