Results and further surgery for CIN III

I had a smear test done in April and 2 weeks later got the results of high grade dyskaryosis (severe) with high risk HPV, 2 weeks later I had an appointment with the consultant and has a LLETZ carried out. The consultant was surprised of the results of the smear especially as every question they asked my answer was no. He advised it was only a small area and removed it and advised that it should be ok now, but results will follow within 4 weeks. 6 weeks later I still had no results but had a text for a pre-assessment appointment 2 days later, after 24 hours I managed to speak to the consultant who gave me the results over the phone and said I need to come in to have a further/deeper area removed under general anaesthesia, he said it’s nothing to worry about and there’s no rush for it to be done, and why a big fuss had been made. He did say that I had to tell them that he was to carry out the surgery. I went in for my pre-op assessment and then later that day had a call to book the surgery in for a week later but it was with a different consultant so I advised of my telephone call and had it booked for the following week with the same consultant. I thought ok that’s sorted and tried not to worry, 2 days later I received a call from the hospital to say that my case had been discussed in there meeting and they want to bring the surgery forward to this Wednesday (the original date I was given) I agreed to this and it has been playing on my mind why are they bringing it forward is there more of an issue that they haven’t said about, but tried to not think to much about it and wait till I go in on Wednesday to get answers as I can’t change anything.
I have then today received the confirmation letter for the surgery to find out it’s with a different consultant, I’m now really concerned that there is a bigger problem than I have been told, but being a Saturday I can’t call the hospital to ask these questions!

I also today got in writing the results from the first visit to the hospital and it has confirmed that it is high grade abnormality CIN III and the excision biopsy was incomplete at the margins and require a further LLETZ under general anaesthetic.

I suppose my main questions are has anyone else had anything like this happen to them and it seems like it is being rushed through and trying to get me in quickly and do you think I should be more worried/concerned than you would be normally with the way things have changed at a quick pace?

Hi Nicola

Just wanted to say hello and hope all goes well tomorrow.

I had my hysterectomy rescheduled to an earlier date, some people cancel so the list is then reorganized. Not sure about a different consultant.

I hope you managed to get the answers you needed.

Wishing you all the best

Jane xx

Hi Jane

Thank you for your message.

Since posting that I have found out that my case has been discussed in one of there meetings with various teams and I’m now not having LLETZ procedure but a cone biopsy, which is the reason for the change in consultant as the original one isn’t able to do this for what ever reason. I know originally they did try to give me this date for surgery when I thought it was LLETZ but because I knew it was a different consultant I declined the appointment.

Hoping I will get some answers tomorrow, as it’s seems they are not fully advising on what’s happening, which is making me think that there’s more to it (i do over think things as it is)

Hope all is ok with you.

Nicola x

Hi Nicola

I hope you get more answers today. Feeling in the dark is so frustrating.

I have to say I have found my Dr direct and to the point when I have asked, if I don’t ask he doesn’t elaborate. So for me asking is always the path to take

Once I got a date and knew what was happening I could do all my research around it and read a few experiences of other people on this site. I then felt more prepared to have the treatment.

Fingers crossed you get the information you need today and an early date.

Wishing you all the very best

Jane xx

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Hi Nicola

I hope you are okay now. I’m going through the very same thing. I had LLETZ treatment three weeks’ ago and was expecting biopsy results in 6 weeks but the letter came today to say I still have the CIN 3 as it was not completely excised. I will be given another appointment in three months time for another LLETZ but doesn’t say whether local or general anaesthetic. I am really worried that I have something more serious. I guess we can’t help worrying but I am a bit shaky today.

Sorry you have received this, I feel that information provided is very vague and no wonder people worry. I would love to be able to give advice but I’m not sure as I was told on the call that it would be under general anaesthetic as they need to go in deeper and wouldn’t be comfortable for me doing it like before and suppose they also don’t want you to move about too much.

I didn’t end up having the LLETZ procedure which is why I had the change in consultant, I ended up having a knife cone biopsy which I went in and had done yesterday.

From my experience I would have thought it they was worried or there was more to it they would have got you in quicker.
With my case when I spoke to the first consultant at my first appointment he wasn’t concerned and thought he had it all and it’s likely I would just have to go back in 6 months for a smear to check all ok, even when I had the results and spoke to him he still wasn’t concerned over it and said if surgery isn’t for a few weeks then not a problem, but then to get the call 2 days later that they are brining it forward to the next week did worry me and I couldn’t speak to anyone about it properly till yesterday. I still feel that they aren’t letting on how bad it is/could be as every nurse and even the consultant I spoke to yesterday said that they have put to get my results back urgently (2 weeks) and I should then have the results in 3 weeks.
Even when the consultant came to see me after surgery her last words was fingers crossed (and she had both fingers crossed) that all comes back ok - I feel that was a bit of a strange thing to say and as if she may have seen something more, but because I wasn’t really with it I didn’t question it.

Now just got the waiting game of the results which I personally think is worse than any procedure being done, the anxiety I have at the moment is high!
Also if that does come back clear it’s the side effects after - I’m in my 30’s and currently single but the thought of meeting someone and getting intimate scares me as who knows if it will be the same after having these procedures carried out and I would really like to have Children but could this effect it, I have been told that because I have had 2 procedures already I will have to be monitored more at the beginning of the pregnancy, so to me that’s even more of a worry than any normal pregnancy, but hopefully if it does happen I will have a supportive partner and will get through it all.

I hope the above has helped and not scared you, should you have any other questions just message me.

Good luck with your next procedure.

Hi Nicola

I’m sorry to hear what you have been through. It’s tough isn’t it? I also thought my consultant had got it all first time but clearly not the case. I also had a clear smear a year ago and can’t believe it really can go from clear to CIN 3 in a year! I’m also single (divorced) and also nervous about embarking on a relationship. You are young and should not worry these things - you deserve someone lovely in your life and children too if that’s what you want. I’m sure it is still possible and will happen for you. I am old (59) and my children are grown up (in their 20’s) but it still doesn’t stop me worrying about them and what they would do if something happened to me. Silly I know as probably all will be okay but as you say the waiting and worrying is the hardest part. It’s easy for our minds to race out of control and think the worst.
I sincerely hope the results from your cone biopsy are good and that you can put all of this behind you soon. Message me anytime. It’s a lonely place to be. All the best.

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