NHS waiting list - how long did you wait ... - Endometriosis UK

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NHS waiting list - how long did you wait for your laps?

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I was referred about two weeks ago for a Laparoscopy to hopefully diagnose what is causing my horrific symptoms!!

Just wondering how long roughly everyone had to wait? I know each hospital will be different but I just started a new job and my probation is 6 months so hoping I will pass before I need to request time off work for a Lap (even though my health should come first) I don't really want it to put my career in jep as I have worked hard for this new job!! 😁

So if you could let me know your wait and also how long you had off work or were out of action for.. This will let me plan better for it!

It's a very daunting thing and there isn't a day where I am not whirling everything over in my head if I am to be diagnosed! For now trying to be positive and keep my mind occupied and having a new job to concentrate on is really helping!! Fighting though the pain and the random shooting stabs now and then as I move across the office!! πŸ˜‚πŸ˜‚πŸ˜‚

Thanks Sophie

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For my diagnostic lap I waited three months, however for my second lap, which was a more specialist operation, I had to wait over a year. Fingers crossed you get your op soon and they find out what the issue is!

That seems a really short wait which has surprised me! Thanks for your reply 😁

I hope you don't mind me asking but how long was the recovery for you after having your first lap?

It took me a year of nagging for them to take me seriously before I even got a referral. For my first lap around three to four weeks if my memory serves me correctly. If you have endometriosis or other ick removed the recovery time will be more. They will probably tell you two weeks and you will be fine, this, in my experience, is baloney. Think more four to five. Another thing is paracetamol and cocodamol don't cut it for post surgical pain so do try and get something a little more heavy duty.

I was off for a month and had to graduly work myself back into my job

I think it's bad that you're told two weeks should be enough. It isn't, it takes me at least two weeks to stop feeling dizzy from the anaesthetic! And if you do a manual labour job like me definitely DO NOT go back after two to three weeks, you'll seriously hurt yourself.

I agree I was in a bad way after had my lap my heart rate went through the roof due to a side affect from anaesetic I was zombie enough if I'm honest plus wounds took about month to heal xx

Yeah an anaesthetic is no little thing, though I think as this one was my fourth one it hit me harder. Did your wounds get infected? Got some lovely infections in mine, am finishing the course of antibiotics but still having problems with one wound.

Yeah I sure did they are fine now what did they find when they done your lap x

Which lap, first or second? First they found stage 1 endo but it was "too hard to possibly remove" so they stitched me up and shoved me on zoladex saying it would cure me. It didn't, the endo got worse and I got debilitating knee pains. A year of fighting with my gynae and trying all the hormone treatments, including a chemical menopause, I got lap number two with a specialist, where they removed some of my worsened endo but had to leave a chunk that was on my bowel and would need specialist surgery with a bowel specialist and a gynae. Currently trying the coil (not hopeful it will work but we will see) and if that doesn't work I'll have my third surgery. I just want surgery three now to be honest.

My 1st lap they found stage 3 endo and I was put on pain med cause I wanted to start a family but I ended up falling pregnant In 2012 but started suffering chronic pelvic pain after fighting with my dr for 15 months they finaly refered me to gynae and had my 2 lap in January this year and found that I had aheadions that had joined my bowel to my womb also had stage 2 endo In my pouch of Douglas but still suffering seeing gynae in September so hopefully know what's going happen next xx

Oh god that's awful. I'm glad you could start a family but it is unacceptable that you had to fight for even basic gynaecological care. (I too had to fight for a year before they'd consider I had anything but bad period pains and IBS and refer me to a gynae) I presume they removed the adhesions and stuff? I'll keep my fingers crossed for you!

Said that to me as well and felt some of the doctors attitudes were A disgrace like spoke to me like it was all in my head I even lost the head at one gynaecoligest as I demanded him to do something and all they offered me was a scan I said what's that going to tell you what u already know

How long were you in hospital when you had your adhesion surgery?

Only overnight what about u x

Got it scheduled for the 22 December. Why did you have to stay in overnight? Was your surgery meant to be day case?

Yeah day surgery had complications after my surgery xc

Did they just remove the adhesions or did they find endometriosis. Were the adhesions a result of previous surgery or from endometriosis?

How do you manage your endo now?

They removed aheasions and endometriosis I manage it with pain relief and heat pads what about u xx

I manage it with Pain relief - are you on the contraceptive pill or Mirena?

No as none of them helped me made my pain worse

What pain relief do you use?

Tramadol paracetamol xx

Has your consultant recommended anything else for you?

What did you take to hospital with you? Enough things for a long hospital stay?

I took pepprmint tea for gas pain pajamias slippers dressing gown comfortable clothes toiletries no really ran out of options with me xx

What pain relief do you use?

What pain relief do you use?

About 2 half months xx

I waited 6 weeks but let them know I was available for cancellations, I was given 2 weeks notice for my op date. You can request it be delayed if required, they are more than happy to do this.

once my GP finally referred me to gynaecology after years of appointments and the GP not wanting to do anything, I got a gynae appointment for 7 weeks later. At that appointment they booked the lap then and there. They tried offering me one the next week but I was on holiday then, so I took the next available one which was for about a month after that appointment. Also had to have the pre op appointment which they sent a letter for. That was booked for 2 weeks before the lap.

So once I'd had a gynae appointment, the lap could have been a week later if I had been available but ended up being a month later.

When I had my first laparoscopy with a general gynaecologist I waited about 2-3 months, but my mum was constantly phoning the hospital every day to see if there were any cancellations so I could go in earlier lol.

I was off work for 4 weeks, but only because they couldn't find anything wrong they had moved a lot of my insides around etc to have a good look. The lap felt very pointless and I was left disappointed with the whole outcome. I was misdiagnosed and waited another painful year before getting any answers, as no one was willing to do another lap because they found nothing in the first one :( plus I also had an infection in my wounds and that pushed my recovery time back.

However, I kept pushing and pushing at my doctors and he eventually referred me to see an endo specialist who he knew personally - I was only waiting about 6-8 weeks. I was finally diagnosed with endo in july, and because my specialist knew what he was looking for, I only took half the time to recover! I was ok about 2 weeks after, but because I deal with pain on a daily basis (aswell as during my periods), I'm only now beginning to feel 100%. Every day is different, and every person will recover in their own time.

I hope you get the answers your looking for, because believe me getting diagnosed feels such a relief! :)

And take your time when your recovering, I'm sure work will understand!

One last thing.. Don't be nervous hun!

I was exactly the same but you have nothing to worry about, as long as you have someone to be with you whilst you recover you'll be fine :)

Got my fingers and toes crossed for you lol.

Lots of love


Also, I forgot to mention I had the endo excised, and had a mirena coil fitted during my second lap. Xx

You could always mention the 18 week protocol the NHS are supposed to use as a guideline. From your GP referral, to diagnosis then surgery their aim is to have this complete within 18 weeks. Many people are not aware of this, as soon as you flag up the fact you have waited longer than 18 weeks they soon put you on a priority list.

I am due to have my 4th lap on the 26th of this month I should of had it on 15th July which would have only been 3 weeks after seeing the consultant by the time I have surgery it will be 9 weeks since seeing the consultant which I still think is pretty good. I have already had my pre op just got to go back to the hospital on 24th for my final bloods.

My first lap was done within 2 weeks as they thought I could have cancer. My second lap was a nightmare. I was told 4 months, then they had to move it back a month because of Christmas. So it was planned in Jan, day before they called and cancelled it. Tried to send me to a private hospital because they were so overwhelmed with lack of beds. Private hospital refused me since I'm too 'complex' and refused to operate on me. So it ended up being booked for march which did actually happen but I had to walk to the theatre since there was no beds and warned I could be kept on the recovery room for ages until they get me a space on the ward. Also on that day there was a lovely woman who had waited, starved all day without water and was told at 6 o clock (nearly 12 hours after she had come in) that there was no space for her and for her to come back the next day and she was bottom of that list again.

Just thought you might need to know how stressful the NHS is, to hopefully prepare you for anything that may go wrong.

Wish you all the best!

in reply to Timothy31

You are right. I think it is worth bearing these things in mind. I remember reading one lady on here had her surgery cancelled at least 3 or 4 times.

I waited 8 months for my op and like you, when I got there at the crack of dawn (as advisedadvised despite my surgery not happening until the aftenoon) there was no bed for me. So I had to sit in a day lounge. I was really exhausted due to no sleep and so cold as a. It was cold and b. I get very cold and shaky after not eating for a while so starving since the night before was awful. All I wanted to do was go to bed and sleep haha. Felt like torture!

I waited 8 months. I think it depends on what hospital you are at, as at the time I was waiting I remember there were others on here waiting a year and others getting an op within 2 weeks! So crazy how different it is.

If you truly can't risk taking time off your new job, I would speak to the hospital and let them know. You can tell them when you'd be able to go forward (so just after your 6 months) and I'm sure they'd take that into account when booking your operation.

I got referred by gp in February had consultation last Monday and no clue to lap date x

Hi. I waited 12 weeks but i was lucky enough for the nhs to send me to a private hospital for my surgery as main hospitals were choccabloc and id already had two hospital stays and many gp and hospital visits with the pain and sickness. I had my surgery they removed alot of endo and i was off work.for a further 6 weeks and even then had to be careful when i went back as im an auxiliary nurse and worked ironically on a gyne surgical ward haha. Normal pain relief really didnt cut it with me so make sure u get urself some stronger ones and rest x

I have waited 5 months for mine!! Had pre op in April and date given is aug 20th. Am unhappy as my normal consultant is not doing it and have someone who is general obs and gynae. For my normal consultant the earliest date is October!! Absolutely disgusted with waiting time!!

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