Feeling a little frustrated here,had Lletz under GA 6weeks ago,only finding out what procedure would be done on day of surgery also was not told what grade CIN was being treated!
After patiently waiting for my results I have just recieved an appointment for more surgery in 3weeks...no results and no idea what the surgery is going to be or why! I phoned the hospital yesterday to be told she can't tell me anything over the phone and not even what the next surgery will be.
where do I turn next to find out the information about my body that they don't feel the need to tell me.
Blimey where are you based? I had smear results letter with suspected CIN level on it and then biopsy results letter with confirmed CIN level.
Sounds pretty unreasonable that they won't even tell you what they are going to do. Surely you have to consent to the surgery anyway, and at that point they must tell you what you are consenting to??
If it were me, I think I would be calling the consultant who performed the first op. You'll probably get their secretary, but can ask them to call you back. It's totally unreasonable that they would operate again and not even tell you what they are doing, or why!
I imagine it's most likely that they didn't get clear margins around the abnormal cells when they did the first treatment, so now want to do a second one, but surely someone can tell you that if it is the case
Hi thanks for the reply I'm based in Scotland. When I had my biopsy results it just said CIN and need treatment followed by an appointment for surgery!
It was the consultants secretary I spoke to yesterday,her attitude wasn't very nice or helpful,she said to wait longer for results letter but surely I should have recieved them before surgery appointment and it's been six weeks already when I was told 4weeks for results,all my other results from smear,colposcopy and biopsies have arrived in 2-3 weeks.
You could try giving your GPs surgery a ring. They normally get a copy of your results for the file so might be able to enlighten you, especially if they are more helpful than the dragon of a secretary!!
My appointment letter for treatment had the biopsy result on it, it was one and the same. I think that they do things differently from area to area though (and possibly even hospital to hospital!)
Hi there, I'm also in Scotland. You should call the gynae secretary back and insist on knowing what your results are. To be given a further surgery date with no reason as to why is unnacceptable. If she won't give you results over the phone insist on an app to discuss them. If you still don't get anywhere with her, ask her for her name, the name of her line manager and the procedure for complaints. I imagine she'll listen then..
good luck :)
I was wondering if the GP could be any help I think I will try that first.
i did also take note of her name and am considering making a complaint.
My good friend who uses the same hospital and gp surgery was diagnosed with cc in January and has never been told what stage it actually is although with how I'll she is and all her treatments and a sneaky look at her hospital notes we have an idea of what she's facing.
i just think that it's ridiculous that they find it an acceptable way to treat people and I'm not willing to sit around wondering anymore.
thanks for your kind replys it helps take some of the frustration/worry away :)
Good plan. You're not being unreasonable - it's your body and your right to know. I would be livid if I were in your situation! Can't believe that your friend is already being treated for CC and they haven't given any stage either. Do these people think they are a law unto themselves or what??
They maybe think that doing the treatment is enough and we should be happy with that :(
getting ready to head to GPs see what I can find out,will update frustrations later lol :)
Vent away lass - I think I'd be pretty wound up in your shoes!!
So I've been to doctors surgery all they have on the system from previous surgery is that I'm supposed to have an appointment to discuss further! The best they can offer is a phone appointment on Friday.
Well, it's better than nothing I suppose but can't really understand why they are making this so difficult for you. Some of the ladies on this site have talked about PALS which I think is some kind of patient group so maybe worth seeing if there's one at your hospital and whether they can get these people to treat you a bit more reasonably.
I really feel for you, it's a worrying time and they are treating you so badly and insensitively. Makes me quite cross!
Thanks for that I will look into it and will await the doctors call hopefully he can tell me something :)
the thing that bothers me most is like you say it's my body and all the appointments make you feel violated enough without them keeping information about it like my body belongs to them and I don't need to know.
Anyway the wait is on again for now lol but thanks again for listening to my moans.
I initially started using this site for info about my friend and have ended up finding it a great help for myself xx
Any time .... that's the great thing about the forum, plenty of us in the same boat, who understand the frustrations.
I am lucky in that I have a consultant who's both really nice and really interested in her job, so will happily talk to her patients in as technical terms (or not!) as they want. I don't know about you, but I do feel kind of let down by my body as a result of all this, and I think not knowing anything would just make that worse. I am 44, normal smears all my life, never been 'ill' a day of my life, never been to hospital .... and now this. I guess I just feel a bit put out as everything has worked perfectly up til now!!
Yeah defo feel let down too and I'm also the same never needed the hospital other than when having my kids.
its great you have a good consultant that's got to make a massive difference and she can keep you updated with it all at all the different stages of appointments and such.