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Endometriosis UK
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APPOINTMENTS CONTINUOUSLY CANCELLED

Hey all,

My first time writing here, I was referred by my GP to the gynaecology department at my local hospital in March and have had three appointments cancelled since this. My new appointment (if it goes ahead) is in October, which puts my referral wait time at 28 WEEKS! I am fuming! Obviously this is massively outside the 18 week referral guarantee. So annoying, after years of endless smear tests, ultrasounds, being told I have PCOS and continuous pain - I was so relieved a doctor had finally referred me. And. Now. This.

Noticed a few of you have had similar issues with hospital referrals, what would you recommend I do at this stage? Who's best to involve in the complaints process?

Thankfully my pain seems to be hugely improved recently, but who knows if this will still be the case by October.

Thanks in advance for your help, it's very appreciated!

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I so sorry about your wait and that the appointments keep being cancelled. You must keep feeling like you're getting hope & close to some help only for it to be taken away. So frustrating!

I thought I'd comment to say the 18 week referral to treatment isn't a guarantee, it's just a target. Most departments in the NHS breach these targets, some by many, many months. Unfortunately, there's not that much we can do about the wait times, it's just a feature of our under funded NHS.

What you can do is contact PALS, they're will be a department at the hospital you've been referred to, it usually comes up if you google it. They get involved and can help to sort these sort of things out. You may get put on a cancellations/late appointment list. I've heard people in here talk about some good outcomes from going through them. The main thing to complain about is the cancelled appointments as that's really bad for your wellbeing.

I hope you get somewhere. X

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Thank you! I had a PALS email on my hospital letter so I’ve emailed them and another one. Going to contact my GP today too so hopefully she can give them a nudge, so frustrating! Fingers crossed x

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Just to update on this, complained to PALS and spoke to my GP who’s going to write a letter... hospital called me and I’m going in this morning for my first gyny appointment! Luckily I’d prepared loads quite some time ago, fingers crossed for a good session

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So pleased for you! It’s funny how quickly things get sorted when other parties get involved 🙄All the best with your appointment. Please let us know how get on 💝 xoxo

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That's amazing!

I've always put off contacting PALS but I've heard so many positive things on here, I think I really should. My patient journey has been horrendous.

Good luck with your appointment. I hope you feel listened to and get something helpful from it 🤞🏻

X

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Thanks for all your support ladies! The gynaecologist was annoying - said because “my pain isn’t ONLY around my period, it’s unlikely it’s endo” 🙄. Oh and also because I was only “uncomfortable” during internal examination, again unlikely. Well, that internal exam meant my uncomfort turned to pain for the rest of the day. But hooray he is actually referring me for a LAP! So we’ll see what happens next... anyone know roughly how long a referral takes? / how long recovery is? I’ve got a hell of a lot of friends weddings in my diary before the years out 😳

Thanks all, you guys are ace XOXO

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Goodness me. Why is it so hard for them to recognise endo?! When I had my first lap it was doubtful & the surgeon thought it was bowels; it was endo.

Ie the waiting lists will depend on your hospital and your surgeons work load.

The “official wait” clock starts from when you were referred to the specialist by your GP.

My local hospital I waited 8 weeks from when I was referred for the surgery itself 16 weeks from date I was referred by specialist to the gynae;

I had two laps there but unfortunately had endo all over my rectum so I had to be referred to an endo specialist to do a lap.

My waiting list there was quoted 30-35 weeks; as my symptoms got severe my GP wrote and I had my surgery date was offered within 2.5 weeks of receipt of the GPS letter ( done two weeks ago on Monday) From referral I’d waited 16 weeks from / (13 weeks from when specialists referred me to have a lap. )

P.s my pain is throughout my cycle but definitely worse at period time.

If there aren’t dates you can do let the surgery department know 🙂 and glad you are having a lap as that is the only “real” way you know whether you have endo or not xoxo

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Sorry to hear about the gynae experience. Unfortunately that's not unusual though and is certainly been my experience. I've been seen by gastro and gynae and had a lap all saying I didn't have anything physical to explain my symptoms (chronic fatigue, abdo pain and back/hip pain) and so I was discharged 2 years ago. I was then referred to orthopaedics due to my chronic back pain and had an MRI in May this year- where I was told I have severe endo. They've not told me exactly what's going on yet as they wanted the specialist endo centre and a bowel surgeon to consult so I'm guessing it's pretty bad and affecting my bowel.

It's nonsense that it isn't endo because you're symptoms are there all month. If you organs are stuck to each other, it'll cause you pain and difficulties all the time. Plus, it depends on what's going on in terms of inflammation, iron levels (mine are high- probbaly due to blood building up in my abdomen). For me, I actually have a relief from some of my symptoms during my period (the back pain, which is present the rest of the month but particularly bad before my period) and my fatigue improves after my period and is worst just before my period. Although there's a change, it's still present all the time. I'm always fatigued and always in pain.

I didn't notice any of these patterns in my symptoms until I kept a daily diary. I would highly recommend that if you don't do this already.

I would also suggest asking for an MRI. It can pick up deeper endo and in my case, it wasn't visible at the lap 2 years ago. Obviously it could've just got a lot worse over that time but my symptoms are not much different so I think it was just missed- the gynae was very confident that I didn't have endo- I think they missed it.

At least you're getting the lap. I hope you don't need to wait too long. As others have said- it'll just depend on your board. I think I was about 6 weeks. If you phone the dept they'll be able to tell you what the wait time is.

Good luck. x

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Your bowel could of very well been visible at the time of your lap, but they just checked your reproductive organs, like in my last comment they didn’t see mine for 3 operations because they just didn’t think to look. Most general gyneas sit through an hours lecture on endometriosis in there whole career x

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Yeah I totally agree. I think they just looked at my reproductive 'bits' even though that wouldn't fit with my symptoms. It's so annoying that I was missed for 2 years... My life has been turned upside down a result.

Such a shame for you having 3 surgeries. It's ridiculous really.

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I have pain all the time, I’m

On the pill so don’t have regular cycles. Had my

Bowel looked at, that was fine, I do have degenerate disk disease but that wouldn’t cause the abdominal pain. I had lap surgeries (1 Emergancy for cystic tumour, one for normal cyst, 1 for gallbladder removal) all within 2 years and I was still experiencing progressing symptoms. I begged and begged for one more look they tutted and said ok but if it’s clear which it will be then you need to try and move on or go pain clinic. Low and behold it was found on bladder, bowel, pod. The other surgeries they were obviously just looking on uterus and ovaries, which it wasn’t on!!

So please make sure on your op date that they will be looking everywhere!! X

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Thanks for the support ladies! I know! I have pain 3/4 weeks of the month, following my period / before ovulation is my relatively pain free time, which the gyny clearly didn’t like 🙄 thanks for the advice too! Will definitely be skint them to look at more than my reproductive organs as I have so many bowel issues now, thought I had IBS for years (which strangely is 100000 times worse when on the pill). And my bladder is ridiculous, I go from fine to needing an urgent pee in seconds! Also, interestingly my last ultrasound for PCOS she asked if I had emptied my bladder (I had, you’re meant too) and said it was already filling up! So that makes me think, something must be there!!!

We’ll see, sometimes these docs etc don’t realise how well we know ourselves and our bodies.

On another separate note: I’m considering having a fancy body scan... it checks your food intolerances, minerals and HORMONES! I’m wondering if they’ll have any insight to PCOS/endo, anyone ever tried it? I’m so intrigued, but it’s very expensive!! 😱 XOXO

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