I was referred in June 2022 for a diagnostic laparoscopy and I am still on a bloody waiting list. It has been 7 months! I understand the NHS is under pressure and I'm not blaming the staff as they are working hard to help everyone but I haven't even had a pre-op assessment or anything! No dates or information...
For months and months I have tried phoning the appointments line and contacting the specialists that were helping me but apparently nobody can tell me anything and I just have to be more patient. I'm so desperate for an answer/ diagnosis.
What makes me more angry is that I have been admitted to hospital a lot due to my symptoms and I was told that my operation would be expidited and that I would be helped quickly.
I can't afford to go private so I have to wait on the public system. I know the privelage of having access to free healthcare but I think this amount of time to wait is unfair at this point.
That's why I wanted to ask how long did it take everyone to receive a date for their operations?
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RueBlu3
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Hi RueBlu3, I had a similar issue and wrote to my local MP to ask what they were doing to support those with chronic conditions with horrendous waiting times. A couple of months later I was called with an appointment for surgery 2 weeks later.
Oh god 16 months is so long, I'm so sorry you're dealing with that length of wait! I got a letter in November saying people can be waiting for 26-52 weeks on average but it could be longer "due to these unprecedented times".
Yeah they are very long waiting lists on the nhs. I waited 20 months before I had surgery. Though after my pre assessment I had surgery a week and a half later.
Oh gosh I didn't realise I've hardly been waiting so far. These waiting lists are crazy. Thank you for replying, it gives me a good idea of what to expect.
I had my consultation last week and was told the lists were really random at the moment, in the case someone is able to get a hold of you to take a cancellation appointment, but she did say it could be up to 18 months. Also your pre op assessment only lasts for 12 weeks so it doesn’t make any sense to have pre op without an op booked if that makes sense? It’s just continual pressures going on at the moment with theatre staff being used to help wards etc meaning they have to really prioritize patients. I work in theatres and I see this from both sides and both sides are just really really difficult at the moment.
After I made a complaint about my treatment, which wasn’t just about how long I’d waited, I had someone phone me to apologise for my treatment, and appointment the following week. That one was cancelled, phoned the same lady back, got another appointment., about a week later. In that appointment they were still trying to get me to have injections rather than laparoscopy. But I stood my ground, as had been in nearly daily pain for a year at this point. They added me to the list, said it would be about 16 weeks, had pre op a couple of weeks later. Didn’t hear anymore, so phoned same lady as before this month, finally got a date 15th February, as long as it’s not cancelled. Sorry for the long post, but basically you have to fight every step, and if it wasn’t for a lovely lady at my hospital, I would probably still be waiting.
Thank you that's all really helpful! I had a similar problem when trying to get an appointment with a gynecologist in the first place, so seems like it's no different further in the process. I'm sorry you've had to wait so long, it's a nightmare when you have to chase up every step x
When I had my surgery in August, I had waited 66 weeks to the day. In typical fashion, Endo was found but not removed so I am back on the list for another surgery and expect to be waiting a similar amount of time (likely this time next year)
What a nightmare, I'm so sorry. You should have been seen by now. I've hardly waited so far compared to you and others who have replied! Makes me feel less anxious about the wait knowing its typical, but also angry because people shouldn't have to wait for that long for help 😭
On list 10months and ended up paying private as was undergoing IVF and could not afford to wait more time. if you keep in touch with the admin team they might help you get in under cancellation?
Exackly the same for me I had my op 2 days ago I decided to have some private tests and also was seen on the NHS I was advised I could wait upto 12 months for a date as they are so backed up which I didn't want to wait that long so I decided to go private but I have got my 1st IVF cycle staring soon good luck with everything
good luck with your IVF. I had lap in May (did it private with the same consultant if I was to do it with NHS and he was also my IVF doc) and was diagnosed with Endo and went straight into IVF transfer cycle in June ..was put on a “long protocol” considering be Endo diagnosis, did FET in Aug and am now here with my bump and 15weeks to go…✨ thought I’d share my news for encouragement as we had a long long road to get here navigating IVF process through covid, failed cycles and finally with MC this time last year after double embryo transfer and a rocky start in this pregnancy with a bad sunchrionic haematoma but this little fighter wanted to stay with us!! 🙏🏻the moral of the story is to stick with it and keep moving forward, don’t look back.
No way?! That's horrible treatment , I'm so sorry! I feel terrible complaining about a 7 month wait when so many of you had to wait over a year. I think the conclusion is I'll be waiting a lot longer since its just the initial diagnostic procedure to see if I actually even have endometriosis I can't believe they made you wait that long
if it’s a struggle for you a 7 month wait is also horrific. A diagnostic lap is often traumatic, as you’ve been suffering for years usually. I get it, it’s exhausting and so many feelings.
Don't feel bad about complaining, 7 months is a long time when you are worried and in pain. It was more to warn you that long waiting times seem to be the norm even in severe cases (I lived those 16 months with a list of symptoms that if I got it would mean it had ruptured and I needed to go to A&E immediately which just made it even more fun!!). The people were lovely, it was just exhausting and stressful waiting.
Thank you so much, everyone's answer actually helped me to know what to expect. It seems like every aspect of the process includes a long wait. Scary to think of how large the waiting lists must be. I'm glad I'm not the only one that's been waiting a while but furious on everyone's behalf at the same time! Your situation sounded so rough, I'm sorry and wishing you well.
thank you and we all just have to keep on supporting one another. Wait times vary so much!
Mon and Tues I felt like really good in terms of energy. Then Wed to today vaginal bleeding and immense fatigue and brain fog floored me to staying in bed or laying on the sofa - ugh 🤦🏻♀️🙈 I don’t know how to help myself. I reckon the hormone balance is out of whack!! X
Hi, I'm interested in replying to your post as I'm in the same boat as you. I waited 16 months to see a Gynae who diagnoses me with Endo. In August 2022 he added my name to the waiting list for a laproscopy. I'm in daily pain, on medication and it truly effects my day to day activities. yesterday I didn't go to work due to pain. I rang the consultants secretary who inform me that the powers that be have closed the operations to routine, are only dealing with cancer patients. They may re-asses the situation in the spring. They hope to get this op within 2 years. however, as the list has been closed there wil be a backlog. At this staged I cried. It appears the surgeons have no control over their lists. The secretary tells me it's out of their hands too. I live in Scotland. It maybe a different situation where you live Take care x
Thank you so much for your reply, the information you've given is extremely helpful. What a nightmare for you, I'm so sorry you've had such a tough time.
I can't believe how similar our situations are, I live in Scotland too! I also waited around 16-18 months to eventually see see a gynecologist (saw her in June 2022) , who then added me onto the waiting list for a laparoscopy. It just sounds like we're going to have to just suffer and wait. It's so scary that they've closed the lists now.
Are we just expected to live with disabling symptoms for years? It's a nightmare.
You take care as well, we're all in this together x
Thank you so much. Mine is just the pits at the moment. We definitely have similar experiences. I live in Campbeltown, about 130 miles from Glasgow on the west coast. Every day is a struggle and its good to know I'm not fighting this alone. You take care too x x
Just got off the phone with the hospital and I won't be seen until 2024, gutted. I'm so sorry you've had to wait that long, that's brutal. Good luck for your lap 🤞
I had my first Gynaecology appointment in September 2022 (im 32) and then a pre assessment in November 22 I thought I would be getting surgery soon after but then nothing. I have spoke to my GP this year who sent another referral in, I have also phoned secretary and so has my colleague who works in Gynaecology but still no luck.
Apparently they have a backlog of priority patients. It's just so hard isn't it. I am missing a week of work every month because the pain is so debilitating.
Trying everything I can to help but nothing seems to.
I really feel for everyone who is is in a similar position ❤️
👋 Hi! It totally sucks how long the waiting lists are!!
I was told the wait would be a minimum of 2 years for me (Scotland) as the NHS didn’t seem to agree that my symptoms were endo and wanted to put me through all sorts of other irrelevant tests that of course all came back clear.
I was lucky enough to go private (my parents helped as I’d been struggling for years and could hardly leave the house or do anything I used to enjoy) and was seen, surgery and diagnosed within 2 months.
I honestly don’t think I could have waited another 2 years for the surgery
I was on the waitlist 9 months, they then phoned me to say they had a cancellation for 5 days time, which I couldn’t do as I was away at the time, so they offered me my ‘original date’ for the following month and I happen to be out of the country. I could literally do ANY other date and they got really shitty saying I couldn’t turn down 2 dates! So took me off the waitlist and put me back at the bottom 😒😒 so I’ve given up and gone private! X
I am also in Scotland. I started badgering GP in March 2021 for a gynaecology referral (had been seen for previously suspected Endo in 2014) and was finally referred in December 2021. In meantime had a couple of private consultations and believed I was going straight to laparoscopy in NHS. Was seen by gynaecology for assessment in December 2022 just to be told I am on the laparoscopy list, and was told it would be a 12-18 months wait for laparoscopy. I then demanded an appointment in November 2023 for an update after no news and was assessed again in January 2024 where I was told it will be another 12 month wait. By this point I will be 3 years since my initial referral. I also suffer from bowel inflammation and painful bladder syndrome, and have had all other tests and treatments put on hold as it's believed that Endo is causing most of my issues. You also can't get referred to the specialists in my area unless you have confirmed deep endometriosis and have had battles with the general gynae who thinks getting pregnant or taking the pill will cure me, and that Endo can't be seen on MRI scans. If found I will definitely be asking for referral to specialist instead. It's really horrible living in pain, especially when we are made to wait so long. I have found coming off all hormones and medications and an anti-inflammatory diet have been the best help in the long run. I hope you don't have to wait as long as I have and that you find a way to cope in the meamtime ❤️
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I'm so sorry that you had to wait that long x
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