Frustrated with lack of information from hospital & doctors (had colposcopy, booked in for cone biopsy)

Hi Everyone,

I hope that someone might be able to help me with how nervous and frustrated I'm feeling ahead of surgery next week.

I had a smear test a month ago and a colposcopy two weeks ago. I was sent the letter for colposcopy without any information about why I was being asked to go for one beyond "abnormal smear" - I really just thought that it meant the test had been corrputed in some way.

At the colposcopy appointment - before the exam started - the doctor told me that I had been asked to attend as my smear test had shown glandular abnormalities, which she explained were changes in the cells in the canal behind the cervix. During the colposcopy she said that there were also "severe" changes in the cells of the cervix and that she wasn't going to bother taking a biopsy as they needed to get me booked straight in for surgery.

I was really upset during and after the test, I was given a printed factsheet about LLETZ and told to wait for a call from the hospital with my surgery dates.

The hospital called me later that day to book me in for a pre-op appointment, which was the first time I realised that I'd be having a general anaesthetic. Obviously I was confused as the LLETZ factsheet I'd been given said it was a procedure under local anaesthetic. The lady booking me in for my appointment didn't have any more information and said that I could ask questions at the pre-op.

The day before pre-op appointment I called my GP to ask if they knew what I was actually having done. They said that they had received a letter from the hospital saying that I would be having a cone biopsy (not LLETZ) and explained a bit more about that procedure, and again, said that the nurse at my pre-op would be able to answer all my questions.

I turned up to the pre-op appointment with a notebook so I could write down the answers to all my questions (ranging from 'do I have cancer' to 'how long do I have to wait before I can go swimming') but the nurse that I saw wasn't able to answer any of these questions properly. She said that she was just going to check that I was fit for general anaesthetic and then handed me another pile of factsheets about everything from general anaesthetic to the painkillers I'd be given afterwards. Buried among this pile of information was a factsheet about hysterscopy. Nothing about cone bioposy. I asked if she had any information about the bioposy and she didn't - but said I could ask the consultant before the surgery (which is in two weeks time).

I have been able to find some information on these procedures (hysteroscopy and cone bioposy) from this brilliant website, but I'm still feeling really nervous and quite frustrated that no-one at the hospital or my GP have properly told me what the results of the tests are and what I'm actually having done in surgery. I have nightmares about waking up after the operation and finding out they've done a hysterectomy (obviously, I know they won't do this but I feel like I'm so much in the dark that anything is possible). Has anyone else experienced this kind of frustrating lack of communication? It's all very well for people to tell me not to worry, but when they send me off with no proper information about what is happening I do nothing BUT worry!

I'm especially concerned because I don't want to turn up to hospital with no confirmation of what I'm having done. I received the confirmation of my operation date in the post but that just says "your procedure is confirmed for 24 July" - WHAT PROCEDURE?!?

Sorry for the hugely long post, I'm just feeling so overwhelmed at the moment and hope that someone can help.  

Hi there, so sorry you have been left in this position. I had a cone and top hat in May and my procedure was fully explained by my consultant in clinic. The procedure itself is not that bad and not too dissimilar from lletz (which I have also had done). Will post properly later as in a rush but didnt want to read and run. Hopefully I will be able to put you at ease a little.

 

Niki

Hi Niki,

Thanks for your reply :)

At the moment, I'm just feeling frustrated that I don't seem to have one contact point to explain what I'm having done (or even to give me copies of the letters between the hospital and my GP so I can see what information they get).

I might try to go back to my GP this week and explain how stressed and upset not having all the information is making me. Maybe they'll explain it better then?

Thanks again!

Dasha x

Hi, It is very confusing and also very emotional (I always cry at colposcopy!!! even though it doesn't hurt at all!!) I've met a range of gynae doctors and nurses and some are amazing, have lots of empathy others are as useful as a chocolate teapot when you ask them a question!

The thing is LLETZ and Cone biopsies are common proceedures and these dr's do them day in and day out and often they forget that this is the first time for us and we are in the dark. I didn't have a cone, but my lletz was under GA. My advice would be to research on this website (not google!) and then ask any other q's you have before your op (your surgeon and anaesthetist will come and see you before). I said a " do I have cancer?" before my lletz and my surgeon laughed at me like he'd heard it 100 times before - not very nice, I felt silly but put me at ease.

 

all the best xxx

Yes, go see your Gp and ask for help. They may not be able to tell you more but they should be able to advise you. Don't struggle on on your own, there are no bravery medals for a stiff upper lip.

it's possible that the answer will be that they can't confirm anything until the tissue they remove at the cone biopsy has been checked at the lab, but it's outrageous that you haven't had a proper explanation of what's going on.

 Good luck x

Hi Jessica and Rosehip,

Thank you both so much for your messages!

I agree, the worst thing is that I don't know what they are looking for so I start imagining the worst case scenario (and thinking that they are deliberately not telling me because I was such a mess at colposcopy!)

I am going to see my GP tomorrow and ask them to share all the information they have received from the hospital, and to then explain those procedures to me. I will definitely ask my surgeon before the op, but I'd like to know before the surgery date as well. You hear so many horror stories at hospitals, I don't really want to go in with no idea of what is going on!

Thank you so much for your support - it really means a lot to me!

Dasha x

Hi Dasha

 

Sorry I took so long getting back to you, I really hope that you get a clearer picture after talking to your GP. It is one of my pet hates when doctors forget that it is actually a real person with feelings that they are treating. Its your body and you have a right to know what they plan to do with it and why. 

A cone biopsy is often prefered for glandular abnormalities as it samples more of the cervical canal, which is where those abnormalities often come from. The procedure itself is not that different from lletz and uses a similar procedure but with a different shaped tool which removes a cone shaped sample rather than a flat one. They tend to do it under general as it can be a bit more uncomfortable than a lletz. I did have different advice leaflets given to me when I've had these procedures, generally the advice is the same but there are slight variations on recovery and risk factors. After lletz I was told just a day taking it easy would be fine but told specifically a week off work after cone as the risk of heavy bleeding is much higher. Also the risk of cervical stenosis and cervical incompetence is higher for a cone.

I was fortunate that my consultant was brilliant at explaining everything, he went through the procedure, recover etc. in great detail and even drew me a diagram of what he would be removing, I also signed the first part of the consent form during this visit. It was only a couple of weeks later that I had my op and the speed everything moves at can be a little intimidating but that is just the way these things are dealt with, it doesnt mean they know something and dont want to tell you.

The procedure itself is really nothing to worry about, I felt a bit vulnerable once my hubby had left me on the ward but once you are booked in and gowned up you will feel dead sexy in those paper knickers Wink. I had a visit from the aneathatist and the consultant who explained everything again, after the flurry of activity you then wait for your turn in theatre which can be a bit boring so make sure you take a mag or a book with you. Then I got wheeled down to be knocked out and before I knew it it was all over, didnt believe they had done anything for the first 5 minutes, once I had come round a bit I was in a bit of pain which they sorted out with a swift dose of tramadol and that was the worst of it over with. The pain didnt come back and I bled very little, so after some coffee and toast I was allowed home. I had surgery at about 2pm and was home by 5.30.

The next day I did have some heavy bleeding and mild cramps but that eased off towards evening time, pretty much slept for the first 2 days but that is down to the drugs working out of your system meore than anything. I had light bleeding and watery discharge for 5-6 weeks which was much longer than I had after the lletz. The worst part for me was the fatigue which I am only just really getting over, but everybody is different and my cone was quite extensive so I dont know if that had a bearing on my recovery. All in all though it was no where near as bad as I had imagined it to be and being asleep for the whole thing leaves a little more of your dignity in tact.

I hope sharing my experience has made you feel a little more confident about having this done.

 

Niki

 

Hi Niki,

Thank you for your message, it has really helped to reassure me! Also I had a giggle at your description of the sexy paper knickers, and I didn't think I had a laugh in me this afternoon - so really thank you :)  (it might sound stupid, but I was really worried about not knowing if I would be able to wear knickers while hanging around before the op ... also, one of the factsheets I was given said that sometimes they need to put a catheter in while you are recovering on the ward, which I hope they don't need :( )

It's really good to know the practical things, like bringing a book or magazine to keep me busy before surgery. I'll make sure to do that! My operation is next Wednesday and I have booked a week and a half off work after that to recover, hopefully it doesn't actually take me that long but I didn't want to have to rush back before I was ready.

At the moment, my biggest worry about recovery is that I'm supposed to be going to a wedding next Saturday. I am both worried about how I will feel physically (cramps or woozyness) and about being out and about if I have really heavy bleeding :-s I suppose I will just have to wait and see how I feel. I haven't told the couple getting married (the groom is part of my boyfriend's extended family, so I don't know them really well and to be honest I'd rather as few people as possible knew - I don't even want to keep discussing it with my close family and friends, let alone a lot of people I don't know very well). It is also my birthday next Friday, but I'm resigned to spending it in recovery - I'll have to have a proper celebration when I'm better!

I went to see my GP this morning, after Rosehip's advice, and asked them to tell me exactly what procedures I am having done (cone bioposy, C&D and hysterscopy) and talked through the procedures in detail. The GP was really lovely and apologised that I wasn't given all this information after my colposcopy, and suggested that once the operation is over (and I'm less stressed!) I get back in touch with the colposcopy clinic and tell them that I'm unhappy that I was not only not given the details of my surgery, but I was given details of a procedure that I wouldn't be having. I'm sure that the clinics see so many people, and that the operations are so routine for them, that they don't realise the effect it can have. I've had so many sleepless nights googling the few scraps of information I was told at different appointments to try and find out what was going on, and as I'm sure you all know Google is the worst thing to consult because I ended up reading horror stories and convinced that I must have the very worst diagnosis. I feel a lot better for having spoken to my GP and more confident about the surgery next week - I just can't wait to get it over and done with!

Thank you everyone for your input, you have all really helped to put my mind at ease (something I honestly didnt' think would be possible!

Dasha x