They have changed my op date AGAIN. ANOTHER 4 months to wait

[wp22]

Op originally should have been 23rd May. Received letter today they have put my lap date back and now its July. They booked this appointment for me January. It was originally May 23rd, then May 30th Now July. I am beyond inconsolable. Can't have another summer fuc..d up again my op. What do I do? Desperate sick of symptoms, sore bbs, crap crap crap sick of it!!!!!!!!

[Sunflower846]

OMG i would get in touch with ur doctor next week and demand an answer for them doing this. There is no need when u have to wait so long anyways. Dont stand for it. gd luck and hope u get it sorted xx

[crystal_willow]

They should at least explain why... its not like they have had to make a last min emergency switch due to sickness as it is almost 2 months away... they should explain why really.

[wp22]

Thanks for a speedy reply, I fuming, fuming, fuming and soooo upset words cant express how I feel right now. I am going down to hospital first thing Tuesday and going to demand to speak face to face with secretary or one of the gyneas. I know what they will say you are waiting just like every other woman, well I am not I am waiting twice as long. Thanks for a nice weekend doctors!!!!

I mean they changed op first time by a week and I had to rearrange things but waiting another 4months. NO!! can't stand it they taking the pis. I mean all I want is for the endo to be cut out. This seems to much to ask for. If I had the money would go private they may listen then to my money but as I am a single parent, father fuck.. off I can't afford it. What have I done in my life to be treated with such disregard by men writing this with tears down my face

[Impatient]

Call the gynae reception and tell them you will be happy to accept any short notice cancellations. Patients have to drop out for coughs colds and flu etc all the time and postpone their ops, just as surgeons also have to have sick leave from the operating theatre, so be pushy and call them up and explain that you are unhappy at having to now wait even longer and are ready and willing and able to take a much shorter notice appointment.

And if you make such a promise, be sure that you can take up any offer an appointment if it comes through. So have bags packed with your hosp kit and wetwipes and snacks,

and inform employer and family and have your house ready for your return from hosp.

Freezer with ready meals in stock for a few days when you do not want to be standing up cooking and doing dishes etc. That type of thing.

they should explain why there is now a problem of that magnitude.

If one of the operating theatres is going to be out of action for a while then fair enough, all schedued operations will have to be postponed, but it does seem like a very long and unnecessary delay to me.

[Amb43 in reply to Impatient]

Impatient, isn't there a time limit in which you have to have received treatment?

[wp22]

All that was written in hand writing with the standard letter was doctor not in surgery previous date so why give me the change of date in the first place. If they had checked it would probably be only another two week wait but because the weeks have gone by so have all the appointment times I guess

[wp22]

Anyone know how to cut it out yourself? I am that low I want it out now, not in 6 months time

[jen1982]

Hi,

you could always try contacting PALS if you're in England every hospital have them. They stand for patient advice liason services and when I was kept waiting for ages for an op I contacted them and a slot miraculously became available within a week! They were absolutely fantastic and I know many people who have had amazing results from contacting them. All I did was send them an email telling them I'd been waiting for so long and I was in too much pain to wait any longer.

Another thing you could try (which worked for me on recommendation from a friend) is to go to your GP and get them to send an urgent fax to your surgeon asking them to get you in quicker as you're in too much pain to wait.

Sadly, it is a case of having to make a bit of a fuss, otherwise they will just assume you are happy to wait.

Good luck, I really feel for you! xx

[wp22]

Jen thank you so much,

I have been doing research and do have the number for PALS today strangely enough. I will do it right now as I am in on my own, I am too upset and just had argument with o/h and parents over my change of date. I am sure they care but don't even want to discuss anything regarding my endo which has ruined my life as I'm sure it has all of us.

I am beginning to think its a personal thing because I got a second opinion, well it wasn't a second opinion really its just the first surgeon in same hospital as second gynae didn't take endo from ovary and endo from rectum, apparently I have a 2mm spot. All I want is for all endo to be just cut out and I will be gone, hopefully. I just want help. If I write this e-mail do you think second surgeon will be funny with me and do me some harm when I am under. Do you think he will just leave endo in or just have a slip of the knife. I guess this sound irrational behaviour but I think its my punishment for wanting the best for myself. Ppl don't like it. I do sound mad, I think I have gone mad. You see nothing goes right for me ever since I've had endo as it has made me very depressed no one is interested in listening except for you guys on this web site X

[wp22]

Jen

Another thing is do you think if I kick up a fuss will it go against me on the operating table/ God what am I saying and thinking. How long did you wait for your op before you contacted PALS? Are you ok now and did what did you have done? X

[Amb43]

Really feeling for you, please hang in there, I know what worked for me was to keep phoning the Gynaes secretary and got my doctor to do so too, pester her/them until they are sick of your name, and want you dealt with too. Sending you hugs and the strength to get through this. xxx

[wp22]

Amb, do you feel it went for you to keep phoning. Just had this argument with o/h and he said his mum(who has had op- gynae stuff) said they can take a dislike to patients. Am I being paranoid in thinking this as I am with the 2nd gynea who is doing next op. I have gone scared and am thinking the worst X

[Amb43 in reply to wp22]

I do feel it helped, if anything they get sick of your name, and want you sorted and out of the way. In any case, you have the right to be upset and distressed over this. Phone again, and also ask if there is someone you could speak to about the multiple delays in your treatment and if there is a time limit in which you should have been see/treated. It also helped to keep phoning and reminding them that, if you are able, that you can be available at short notice if there were any cancellations, it happens all the time, and that is how I got mine. Short notice would still have to be a couple of days before, as you will have to do the fasting thing etc.

Or as jen said, call PALS, speak to them, stress to them the severity of your pain, how it is affecting your daily life, how you can't go on. Fingers crossed they can sort something for you, but, remember, THE SURGEON WILL HAVE NO KNOWLEDGE OF YOUR CONTACTING PALS, you will just be on his list that day,

I do know what you mean though about worrying they will treat you badly, but, I do think it is the stress and worry making us paranoid. I did kick up a bit of a stink (another story) and felt I wasn't going to be treated fairly. I even irrationally thought to myself, they have told me I have got Endo even though I haven't, just to shut me up!! Or, that because I had mentioned the Pouch of Douglas being a possible site (because of my lower back pain), I was convinced she wouldn't even look there. I actually saw my surgeon, she asked to see me before my op and it was a little tense then, but, really made me laugh how we came out of her office and she went flouncing off down the corridor, like something off the TV, nose in the air, and didn't even acknowledge any of the nursing staff etc.

However, it is no doubt the stress you are under (not helped by a mother-in-law type who may well have had some gynae treatment, but even if she had Endo, yours and her treatment, pain, would be very, very different) is causing you to worry, I assure you, it is more than their jobs are worth to do anything other that treat you properly.

Please try and calm yourself, take a hot bath, to ease your pain and your mind, You don't want to get yourself into such a state that when the time comes you won't be emotionally strong enough to handle it and they may postpone.

Take a big deep breath, and think of doing some of the above. YOU WILL NOT AFFECT YOUR TREATMENT by pushing for what you deserve.

Sending you the strength to get through this. Much love xxx

[wp22]

Amb, sorry for all questions, I am not really thinking straight. Did it take you long to get your op from when you started phoning secretary? I got my appointment back in January and now it has been changed for a second time, as I did not phone up with regards to first date change as it was only a week, but still had to get it into my head another 7 days waiting. It will be a total of 6 months. Yes too long to wait with all these symptoms I get which are very very uncomfortable and painful too. It is also really affecting me mentally which I guess is the worst of all, if I were strong right now I'm sure it would help ease things a little but with no-one bothering to listed I get so frustrated. X

[jen1982]

Aw huge hugs, don't worry you do not sound mad. I'm sure a lot of us have been in this boat at some point, it seems to be the nature of the disease My OH is similar, we constantly argue over this stuff.

Don't worry about contacting PALS, it will only affect your treatment for the better, the surgeon will not be at all bothered. I've never had anyone take it personally, and as far as I was aware the surgeon personally had nothing to do with it, only his secretary. So don't worry on that front at all. I don't know what they'll do regarding removing the endo, but when you go in for your op make sure you tell your surgeon all your concerns about what they may or may not leave In, write it all down ready.

The first time I waited about 6 months, the second time I waited over that, but my hospital is particularly slow because my surgeon is ill himself. Had it been anywhere else I would have contacted them much sooner. I would just tell them you're in too much pain to wait and how desperate you are, it will not affect your treatment in any way.

I had my endo excised, the second op was to remove adhesions, the endo had not grown back in that time. I'm actually on the list again waiting to have an ovary remove as it has stuck down again, but that wasn't from endo it was from a burst appendix! Are you under an endo specialist? My surgeon is an endo specialist and he's fantastic.

PALS will normally get back to you in a couple of days, but as it's a bank holiday it may take a little longer. Don't panic though, I would definitely give it a few days as it'll take them a little while to talk to all the relevant people xx

[wp22]

Jan, yes he is a specialist in endo. I am going tomorrow at 8.30 apparently there is a PAL,s office in the hospital and that's what time they open. do you think they can really help me get an earlier date or should I go straight to the gynea ward and try talk to either consultant or his secretary. Do the PALs contact you by letter or phone call to tell you the news, as I am expecting bad news. X

[jen1982]

Then you should be in good hands and I'm sure he'll get every bit that he can out and know what to do if he can't for some reason.

When I contacted PALS I just emailed them and they got back to me within hours, that same day my op date came through and it was for just a week later. They really do help with that sort of thing, I can't recommend them enough. My surgeon is one of the most popular in the UK and he is booked up for a year in advance, but they managed to get me fitted in. They did the same with another girl in my situation too, so they definitely have a lot of influence.

You don't really need to go in and see them, you can do it over the phone or even email - they will sort everything out for you if you give them your name, number, hospital number and address etc. Maybe try and ring your consultant's secretary first thing, and if you don't get anywhere with them, contact PALS. They just contacted me by email, I gave them my number but they replied by email. Hopefully someone will get this sorted asap. X

[wp22]

Hi,

I have decided to go into hospital to see the PAL.s people at 8.30 when they open. My good friend is coming with me. I really hope they do help me like they have helped you, but because of what's happened and how its messed my head up I kind of get the feeling nothing good will come out of it for me and things will go against me. Here goes the paranoia again. I will let you know how I get on when I am home. Its making me nervous and has really ruined Easter when I should have been enjoying it. X

[jen1982]

I can understand your feelings completely, but hopefully they will set your mind at ease, you have every reason to see them, they can't get away with cancelling you like this with no reason. Sorry it's ruined your Easter but hopefully tomorrow they'll put it right. Please come back and let me know how you get on and I'm glad you've got a friend with you xx

[wp22]

Hi,

Went to see PAL,s they said its not a drop in centre but he took me to a room and took some details. Half an hour later he phoned to say he had spoken to the management and it was the secretary's fault, she had booked me in when surgeon will be on leave and July is still the next only available date. Upset by this lack of help I immediately phoned the secretary and she said there is nothing they can do then she said O my colleague wants to talk to you. It was the 1st surgeons secretary (as I changed surgeons because 1st one couldn't remove all of my endo and hope the second gynea will). She told me to wait until Monday when gynea and his secretary get back from their holidays and she will speak to gynea and she will try and persuade him (only if he is willing) to put another clinic on for me, meaning another day for surgery. So now I have to wait another week for an answer, and I have a feeling that July it will be. I did stress how much I am in pain, I have symptoms and how it is affecting my mental health, its nearly thrown me over the edge to say the least. I think why should I pay the price for the secretary's mistake. I have been counting down from 4monts and would have had my lap next month, now I am back to square one, another 4months to wait. It may change again which I am expecting. X

[jen1982]

Oh no, that is ridiculous, and yes you shouldn't have to pay the price! I am really surprised by PALS, maybe they respond better if it's in writing for some reason. If I was you I'd go to your GP next and get them to send an urgent fax to your surgeon explaining you are in too much pain to wait and that it's seriously affecting your life and your mental health. My GP did this and I got a date much sooner. It maybe worth one last shot if you don't get any joy from the secretary. They sound absolutely useless. So sorry you're going through this xx

[wp22]

Phoned hospital gynea secretary after waiting for a reply as she had told me to "hang fire until Monday". Came to around 4pm and I phoned. Guess what stupid secretary couldn't even remember talking to me last Tuesday. She remembered after 5minutes. O if I wasn't going through this I wouldn't believe all of this myself how incompitant they really are. What an absolute JOKE!!!! Gynae not back until next Monday and only then they will get round to asking him , sometime if he could maybe cancel something else in order to put another surgery date. And when I spoke to gyneas secretary, after me being told it was her fault, she claims she has no say on appointments. I am fuming and so upset. Went to GP and they will write to hospital. Get the feeling you are on your own in this nightmare. No one wants to help unless you show them the colour of your money, if you can afford it that is. Where do I go from here X

[wp22]

O I have stayed in all day expecting some news, and for nothing. Ha wana cut it out myself, id do a better job