No date 😔: Hello everyone I’m gutted and... - Endometriosis UK

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No date 😔

vmagpie profile image
18 Replies

Hello everyone

I’m gutted and angry, I phoned the operation waiting line today to find out my date and was told no date is set but it won’t be until next year.

I’m pissed off because I waited a long time for MRI results to come back before they’d set a date, but was told in May/June that I’d need a lap regardless of the results. I waited for these results and finally get my appointment, I couldn’t get any straight answers off this gynae consultant. He did however say he would book me for my laparotomy to remove a lump and an explorative laparoscopy, got letter for pre op for the 14th of November and was told to ring for my date.

Yeah... and we’re back.. waiting.... with no idea of how much longer I’m going to feel like this.

My life revolves around my symptoms ☹️

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vmagpie
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18 Replies
princessk09 profile image
princessk09

Hey unfortunately the wait is quite long, I was waiting 9 months for my lap but it was only because I contacted PALS and they gave me a date.

Normally the lap is about 1-3 months after the pre op since they are only valid for this long xx

vmagpie profile image
vmagpie in reply toprincessk09

Hey, I know really... I’m just cross..

just felt like this wait for results has held things off where as if they’d put me on the list when they said I’d need one..

I’ve been trying to figure things out since I was about 17, I’m nearly 34 and I’m tired of pushing for things.. guessing as it gets closer I’m just getting more and more impatient xx

wanwood profile image
wanwood

That is so frustrating. Keep ringing if you can stand it! I don’t know if it helps or not but it’s the only way the message will get through that this is your entire life that is being affected by the wait.

If it’s any consolation, I had my pre-op in April and I still don’t have a date. 🙁 xx

vmagpie profile image
vmagpie in reply towanwood

Oh bless you,

I’m sorry you’re still waiting. Its horrendous. I really value the nhs and feel wrong complaining about it... think when we experience horrible symptoms over such a long time it’s easy to get stuck on my own needs.

I work, I’ve got 3 kids but I’m struggling and I’m fed up.

Hope you get a date soon.

Take care. Thank you for your reply xx

wanwood profile image
wanwood in reply tovmagpie

Aw, thanks for your reply and for your kind words. I hope we both get a date soon xx

vmagpie profile image
vmagpie in reply towanwood

Hi wanwood.. as if by magic I get a letter today with a date! This year! I’m baffled I’m told things will happen, they don’t... then I’m told things won’t happen... and they do!

I really hope you get a date soon, let’s just hope mine isn’t cancelled (can’t get rid of the niggling negative side lol) xxx

wanwood profile image
wanwood in reply tovmagpie

Thanks!! Great result! xxx

KimPV profile image
KimPV

Hi there, it’s crap isn’t it?

Pre ops last six months now so will be around then, or they will just give you another if it runs out. Talk about waste of nhs resources:(

I had my pre op pretty quick after my consultant put me on the list for a hysterectomy, but I’m still wait g. I’ve been told new year now. At first it was within 7 months, they should be able to give a rough estimate.

Keep badgering them, let them remember your name ;) and get on the waiting list. Sorry I didn’t have better news x

KimPV profile image
KimPV in reply toKimPV

Cancellation list I meant x

vmagpie profile image
vmagpie in reply toKimPV

Thank you.

I don’t know if I’m expecting too much, I know there must be loads of us in a similar position. But these symptoms just make me feel sub human almost. Having to nap every day, discomfort if not pain most of the time.. I also feel it’s adding years to my body. I’m 33 and feel 80 odd.

Thanks for your response

Hope you’re ok xx

Really sorry to hear this.

My symptoms were also worsening & on a long waiting list. I ended up getting my GP to write to the surgeon over the severity of my symptoms & that got me a date within 2 weeks of the letter, suddenly a space became available 🤦🏽‍♀️

The other route to also go down is through PALS if it is an NHS hospital. Contact them, I found them very helpful. I was supposed to have my follow up within 4 weeks but got issued an appointment over 2 months later 🤦🏽‍♀️ so I emailed PALS & they sorted an appointment really quickly!!

It’s awful but sometimes it pays to be a pain in the backside 🤣🤣🤣 it’s not right but unfortunately it is how it is with many hospitals...

Contact your GP & PALS ASAP& I bet you get a date soon.

Good luck xoxo

vmagpie profile image
vmagpie in reply to

Thank you.

I’m going to have to start being more pushy. The consultants secretary already remembers me over the phone.

I’ve spoken to her again and she’s said whilst my consultant is on holiday for two weeks, she’ll show my case to head of gynae/surgery.

I was getting a bit upset on the phone and she said “he’s away so I can’t see him doing it earlier” I said “I don’t care if it’s him or not, he doesn’t seem bothered anyway (sob sob 😢)” bit embarrassing but she’s agreed to get it looked at.

I feel like things are only looked at if you become a problem, then they label you as anxious or sensitive or highly strung.

How are you? Xx

in reply tovmagpie

Go to your GP & PALS they will fight on your behalf. You can’t wait another two weeks whilst the consultant is away, screw that!

The problem isn’t your consultants list it is the surgery unit & you get your GP involved & writing to them. Honestly you will get a date sooner that way! The endo nurse suggested that route to me, it is effective !

Why should you suffer with symptoms & potentially endo is getting worse & harder to treat . It disgusts me how women’s issues are perceived 🤦🏽‍♀️

I am good thank you. I am 9 weeks pregnant after trying for over 7 years. Biggest relief to my endo symptoms 🤣🤣🤣xoxo

vmagpie profile image
vmagpie in reply to

Oh wow!

Congratulations. I hope pregnancy is treating you well so far.

All the best of luck xxx

in reply tovmagpie

Thank you. Good luck with getting a date sooner & hope your surgery goes well xoxo 😘

cmbxm profile image
cmbxm

Contact PALS, once you go over the 18 week wait times, PALS are very good at getting you nudged along x

MrsL2018 profile image
MrsL2018

I know exactly how you feel, I went to GP over a year ago I've been waiting for a lap appointment since June (having waited 8 months for gynae referral appointment) and keep getting told that there's "no date". . I had pre-op in July but still nothing. I bit the bullet and had a private consultation on Monday, the consultant I saw also works for the NHS and said she thinks I'd be waiting ANOTHER 6 months from now, this is for NHS Tayside so your area might be different. I'm now trying desperately to work out how I can finance going private as, as you say, life just revolves around these symptoms and I cant go on like this. It just feels so frustrating that nobody listens, nobody cares and there's nothing you can do about it. I really hope you get some answers soon xxx

vmagpie profile image
vmagpie in reply toMrsL2018

Thank you, you too.

It feels like such a drawn out process doesn’t it. And when we’ve been struggling for years just to be listened to it’s not on. Literally feel like I’ve been waiting half my life for this.

Hope you get a date soon. Have you tried going through PALs to try and push things?

There is no way I can go private, struggling as it is to get by. Feel like I’ve got no option but to wait :( xxx

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