22 week wait for surgery!?!?!?

[Amber83]

I went to endo centre at Oxford hospital in November, I was given MRI, this diagnosed deep endo. My full diagnosis from previous laparascopy and MRI is endo obliterating pouch of Douglas, overlying ureter, on round or broad ligaments, endometriotic nodules on back of uterus, adhesions and my bowel is stuck to my uterus. I'm am in agony and feel like I have the flu all the time.

After yet more chasing which I didn't expect from a specialist centre, I have been told today that surgery is likely to be a 22+ weeks away!!!!!

I'm devasted, I cannot do this anymore. Is there anything I can do to get surgery time cut?

[dawntildusk]

hi amber. i can totally sympathise you. ive just gone through the same. my op was suposed to be down as urgent but ive waiting from mid oct and only just got a date for next month. i would recommend going back to your gp to see if they can get it expidited. all else fails just keep ringing the admissions every week and ask to be put down for any cancellations. hang on in there!!!

[Amber83 in reply to dawntildusk]

Thanks for your reply Hun.

I'm gonna try and get an appointment tomorrow. I sent an email to endo centre asking if there was anything else I can do and she said they may do something sooner if there is a clinical reason why and if I could get a letter from gp to get it expidited. But if they don't consider the severity of my endo as clinical reason then what will they consider. I'm trying my hardest to hang in there but I've been hanging for a long time now 😔

[dawntildusk in reply to Amber83]

i dont think the medical professionals really understand how this effects us. it really is hard. just keep doing what u are and youll get there x x

[Curlymum]

Hi Amber83,

I understand your frustration as I am in a similar position:/

I too am waiting for an op in Oxford under N. P.

I had MRI at beginning of Dec, saw specialist last Monday... With decision that I need a hysterectomy for newly diagnosed adenomyosis, along with excision on endo around surface of uterus, on round ligament, ovaries tethered to uterus by endo. Endo all over pelvic area - with left ovary hugely enlarged with a cyst, endo in ovarian fossa, endo all around my left ureter. Uterosacrals covered in endo - the list goes on!!!!

I am in constant agony and rang today to chase my appointment date for surgery... Only to be told it takes around 2 weeks to sort the referral and consent form I signed to get to surgery booking team!? I was told I should expect to wait p to 24 weeks!!

I too am in agony - I'm rattling with the amount of tablets im taking for pain, depression, anxiety, migraines etc

I hope you can get seen sooner - and I hope I can too....

I was told that the list for NP was a long one due to her being so popular.

Big hugs xxxx

[Amber83 in reply to Curlymum]

Omg! Thank you for replying to me. It's comforting in a weird way to know some one is in the same position as me, well worse actually as I don't have adenomyosis. I'm under J.K was meant to be seen by N.P but saw her assistant and was referred to endometriosis centre and saw J.K. I wonder why they referred me to someone else? Like you I had MRI beginning of December and I called theatre booking team today who said they had my booking form, do you think that means my referral for surgery is done? I was told it would be put on the system within 2 days but the wait for surgery 22 weeks.

I'm rattling aswell but won't give in and take antidepressants because I'm scared of them 😕

Big hugs to u too x

[mablesky]

I think these endo centres are a great idea but it does appear because of the specialisms involved in the surgeries we seem to have to wait a long time for it !

I waited nearly eight months for my surgery in cornwall but it has been worth it .

I really hope they can bump you up the list and get seen seen to sooner ..

[Elisamatthews11]

Hi,

I am also under Oxford and was told about massive wait. My GP had already written to them to hurry them on due to the large amount of pain killers I am on and they hadn't acknowledge the letter. I then email patient liaison team saying about duty of care and 18 week rule for treatment etc and complained then low and behold the following day they have booked me in for my operation within 6 weeks of email. I go today for my pre op and the op in two weeks. Try and get your GP to put some weight behind it too.

Good Luck

[Amber83 in reply to Elisamatthews11]

Thank you, I needed to hear a story with a better outcome this morning. Just sat on the phone for ages and I can't get a doctors appointment. Keep fingers crossed I can get one this week x

[Elisamatthews11]

Bless you...

I have not even been diagnosed yet but hoping the lap will have all the answers...

[applebird]

Hey, by sounds of it your surgery could be multidisciplinary involving a bowel surgeon, or require a longer time period so this puts you further down the list as it's more difficult to coordinate a larger surgical team and/or a bigger slot for surgery. As some have said you can see if your gp can expedite it and go on cancellations list. The shortest wait I've had was about 20 weeks, currently on a 52+ wk wait for multidisc.

We're all in the same boat, so understand your frustration xx

[Amber83 in reply to applebird]

Your poor thing, 52+ weeks that's really bad.

Those are good points you've made, I just wish it made it easier to wait. How do u cope? X

[applebird]

Just think you are better waiting for the right surgical team/time than having some hack job done at short notice. Concentrate on preparing yourself for surgery and stuff you need to do in the meantime. What helped me psychologically was seeing a lady who'd had endo for 30-40 years on the ward, she'd had hyst and was still undergoing surgery on the bowel, terrible shape. That and the terminal cancer patients. I know it's no consolation at all but when sitting in a ward dominated with cases like that it made me realise why I wasn't top of the list.

In terms of management of pain, tried every drug poss until I found what helped most. Acupuncture, Endo diet etc etc any way I could be proactive in managing things myself.

As for right now, I fell preg so am at lowest pain level I've had in years, still on waiting list as they anticipate it will come back and the baby should be born by then! Xx

[Amber83 in reply to applebird]

Very true, Makes me feel selfish when I think of others in worse state but some how human nature has it that those things don't seem to over ride thoughts about ourselves. I'm gonna try tho xxx

Thank you for ur advice xxxx

[applebird in reply to Amber83]

It's called self preservation, we all go through the same process unfortunately as nhs badly in need of more consultants/theatre time. Stick at ringing the appt office/consultant's secretary and hopefully they will fit you in sooner xx

[Hidden]

My wait time is 35 weeks plus I'm slowly getting closer to op, is bloody hard waiting so long hope ur seen soon xxx