Endometriosis UK
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How long is the wait?

Hi All

Having already been to my GP who thinks I may have Endo, she suggested I try the pill and give it 12 weeks. If it doesn’t work, she said she’ll refer me to a gynaecologist. I’m on week 9 and in the middle of another flare of period pain which has lasted 9 days so far.

I’m just wondering, could you kindly let me know how long you had to wait to have your first appointment with gynaecologist after GP referral?

And how long did you then have to wait for laparoscopy?

Could you kindly state where you’re from in the UK. I’d just like to get an idea of the wait I’m in for.

Thanks

40 Replies
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Hey, from my first gp visit in June 2017, it took me around 3-5 months to see a gynae. I had to see 7 different ones in order to find the right one and I eventually got a lap done 2 weeks ago.

I was referred for my lap in January 2018 and had my lap 31st January after my gp speeded things up.

And I live in Manchester xx

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Thank you for your reply. You had a long wait! I hope it helped and you are feeling better for it xx

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Yeah I’m still recovering a little bit but feel a lot better xx

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My advice is, don't wait any longer, ask for that referral now.

In terms of wait time, there's a national referral to treatment target of 18 weeks, so that's what services are aiming for. It's unlikely to be less than 18 weeks. I think when I was first referred, it was about 14 weeks or thereabouts. That was Lothian Health board but 2.5 years ago now. My current referral went in a funny way, through orthopaedics and I waited 9 months in that waiting list, so I actually didn't wait this time.

Once I saw the gynae 2.5 years ago and they reluctantly agreed to do the lap, it was not long until the surgery, maybe about a month, though I'm not sure. The biggest wait is usually to see the consultant, that's why I suggest you push for the referral now. It didn't sound like this pill is helping.

I hope this helps.

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Thank you for your reply! Really helpful.

18 weeks is so long! But I’m going to have to keep it in mind that it could be longer. I have already booked an appointment to go back to my GP and request referral but the earliest appointment I was given was 2 weeks!

It seems like so much time gets wasted with people being referred from one doc to another.

Thank you.xx

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The system is a mess. I've been on gastro, gynae and orthopaedics waiting lists, all for the same issue. It's been a total of 2 years waiting time. It's normal but that didn't mean its OK or acceptable. The NHS is underfunded and they need more resources. It's a political issue really. We can complain to the health board and our mp. It won't make a difference for our case but it makes noise, which can help.

I hope you have an understanding GP.

Good luck. X

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I totally agree! Completely under funded. I’ve been in a & e with my mum a no of times this year. She’s 73 and was so poorly she had to lie down across the chairs in the waiting room because they had no beds. She ended up staying in hospital for a week.

It’s so unfair on the people who need better health car and so unfair on the staff who are stretched beyond belief.

Luckily my GP is very understanding. Getting a referral won’t be an issue, but I worry about what happens next and how long it will take!

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That's great your GP is on board- that's half the battle sometimes.

It sounds a long time but it'll come round before you know it. Just try to not think about it every day and find some ways to cope. Meditation has been my life saver.

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Hi Allthatglitters

Wow that is a long wait! I hope you don’t have too long to wait now and hope the surgery goes well.

Thanks for your reply x

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Yeah it’s so busy that clinic but once there, doesn’t appear to be any messing around. Which part of the country are you in?

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I’m in Watford, Hertfordshire (south east)

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Hope that the waiting lists are shorter for you :)

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I was referred when I was living in Nottingham and I saw a consultant within a week (the health services are so fast there). It was about a 3 month wait for the lap though. I live in Kent now and my referral has taken about 3 months, so it varies a lot.

As it's been 9 weeks already and you're struggling so much, I'd definitely ask the GP to refer you sooner. Sounds like you've given it a good go and there's no point delaying seeing a consultant if it can be avoided. X

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Hi Ericaa42

Right I’m moving to Nottingham 😃

Yes I’m definitely going back to the GP for a referral.

Thank you for replying xx

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Hahaha I know the feeling!! Wish I still lived there 🙈😩 I hope you get it all sorted 🧡 x

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Thank you!

You too x

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I’m a student living in Nottingham but only live half an hour away at home anyway, I was referred in November and had 2 operations by March. I heard a lot of people travel up to Nottingham for treatment at the centre I went to it’s called the Circle if that could be an option for you. I think they have a centre in Reading which is a little closer for you ? Hope this helps :)

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I think as a few people have said that having your GP on side is half the battle. I know a few other people with endo, not just me and would say definitely give the pill a go, it can take 3 months to really get into your system. I didn't have a GP on my side and it took 17 years to get to a laparoscopy (during which time I tried 5 different pills!). From seeing the consultant the lap was about 12months. Simply because of emergencies which quite fairly went in first. I was given about 2 weeks notice for my op. This was back in 2014 so not sure how the process runs 4 years later. Hope you get thing sorted. 😊

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Thanks Lyra.

Wow 17 years is just awful.

Thank you. Fingers crossed I get this sorted whatever it takes x

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It took me 8 weeks from gp to see a gynae and then the gynae said I needed a lap and it was 9 months. I had that in april, my follow up appt for a further consultation is in 2 weeks!! Im in east kent and there are multiple gynaes in kent but I have had a long history and is a little more complicated then the usual surgery. From experience it seems that wales and northern england have less waiting times then south east,london, cambs etc. From also previos surgeries it depends if you can cope day to day if not then you get moved up the list. If you can afford it I would go private or you could ask to go on the cancelation list if you are flexible but you usually only get 24 to 48 hours notice and depends what sort of lap they are doing xxgood luck with the wait and surgery when you get it 😀

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Hi Jess

Thanks for your message.

Can’t believe you still haven’t had your follow up appointment!

It does seem to vary from different parts of the country. Can’t believe how long people have to wait!

I can’t afford to go private unfortunately.

Good luck to you too xx

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Thanks only 15 days to go! Not that Ive been counting 😁then will still have to await a date for another surgery!!! Lucky for me im coping day to day having bad days 2 to 3 times a week and I have a fabulous support network. My main way of coping apart from medication of course is my mindset. I just focus that at least endo is not life threatening yes its god awful but could be a lot worse. It has ruined a lot for me like not having a family but I have a great partner who loves me even in my darkess moments. My gp and gynae are fully aware of my needs and always offer me help whilst im on the waiting list. I know its hard but get nagging to your gp or gynae (depending what stage your at) and if they cant get you up the list they will offer you help most of the time. Ive had 7 laps so have noticed the difference in waiting especially in the last 3 to 4 yrs. Also surgeries dont always fix it. Unfortunetly most of the time it just covers a bridge for a few yrs (well in my case that has been the case) so dont pin all your hopes on it xx also worth a look have you considered the coil it doesn't work for everyone but some people have said its better then the pill. Just a thought. X

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Hi, I had to wait 3 months to see gynecologist. Then another 3 months for laparoscopy. I'm from Kent. Good luck. I hope you don't have to wait to long.

Debbie

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Thank you Debbie.

All the best to you too

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I was referred to gynaecology January 2017 and only just in July I was told I was being given a date for a laparoscopy. Not even a month later and tomorrow is my surgery. I live in Newcastle and NHS times are different around the country x

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Thank you! Good luck for tomorrow x

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Thank you! I’m so petrified lol xx

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Oh bless you. You will be in good hands. Remember the doctors do these operations all the time. Sending good thoughts your way x

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Hello

I'm in Somerset first appointment was 2 months (I got a cancellation appointment so i only waited 1 month) and my lap had been booked, again its a cancellation appointment which is 2 months from my first appointment. I was told that I would likely have to wait the full 18 week, from when i was referred to have the lap which would have meant waiting 3 months or so from the gyne appointment.

It varies alot in different trusts, but once your on the list you can ask to go on a cancellation list as I did which may speed up the lap date.

Christina

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Thank you. I will definitely ask for the cancellation list x

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Hi, I have recently had a laparoscopy to discover I had a bad flare of endometriosis .. This resulted in laser removal internally. I waited 2 years for my GP to take me seriously .. Had MRI/CT scans to find nothing until finally I got referred to Gynae .. (only the start of this year) finally at the end of July there was another clinic of which I attended and within 2 weeks I had a date for my laparoscopy and I live on a island at the top of scotland! So I hope you can get one soon to help find out where about the problem is occuring!

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So bad that you had to wait two years!!! Glad you’ve had the laparoscopy done now.

Thanks for your message x

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I was petrified about getting it but once it was over and I knew what was causing the pain I was happy that I could finally move on! But if they had listened to me years ago I wouldn't of had to deal with the severe cramping and sickness! x

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I have just waited 14 months for my lap. It would have been longer but I took a cancellation that was offered to me. I'm in Kent. I sincerely hope that your's will be a lot shorter but NHS is on its knees sadly.

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Wow that’s long!!! Thank you x

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I waited 4 weeks between seeing a GP (for the 6th time might I add) and seeing a gynaecologist. I had a diagnostic laparoscopy 8 weeks later after seeing gynaecologist xx

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Wow that’s quick! Was that recently?

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That was last year! I saw GP in May 2017, saw gynaecologist in June and had an op in August !

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Hi, I was referred for lap in may and I’m still waiting, maybe I need to give a call. I am from Kent

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Yes. Maybe give them a call to see where you are on the list x

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