Severe Abnormal Smear, Lletz showed nothing, now need more biopsies higher up cervical canal / womb. Anyone had this?

Hi everyone - I had severe abnormal cells in smear in December 2012 followed by Lletz procedure on 12 February 2013. Nothing was found in Lletz and now my gynae and another gynae who specialises in oncology want to take more biopsies from higher up the cervical canal and womb lining. I'm due to have this under a GA next Tuesday (26 Feb).  Has anyone else had this done?

I'm seriously freaked out by this as I hoped the Lletz would have removed the cells or at least seen where they were!  The Lletz was quite large - 1cm taken which my gynae said was almost like a cone procedure.  The gynae/oncologist wonders whether the cells on the smear had come from higher up.  I was banking on pre-cancerous cells and am now scared that someone specialising in oncology is involved.  It gives a whole new take on things.

I'd never had abnormal smears before and no real symptoms apart from vague pelvic pain and I had an MRI for that in December which came back clear.  

Any advice / information would be greatly appreciated

Louise x 

Hi Louise,

I had similar happen last year in that my biopsies showed cin 3 and my lletz result was normal, I was told that it was only a small area and the biopsy could have removed it all and to come back in 6 months. The result of my 6 month smear and then biopsies was cin 3 again and covering a bigger area so i had lletz again and the result of that was cin 2 removed. I don't know if it was just missed first lletz and now they've got it or what but i feel a bit better about the fact that my lletz showed up something last time. My next 6 month check is April fingers crossed it will be gone this time. It's an awful worry isn't it, I think it's good you're having further checks now instead of being left to wonder was it missed, even though biopsies and check ups are no fun, its better to get them over with I think and know for sure. Good luck for Tuesday

Hi there - thank you for responding to my message.  What happened was that on December 12 2012 I'd been to see a gynae about vague pelvic pain I'd had for a few months. I'd been seeing a general consultant about this and had undergone several tests as at one point they thought they could see a 6cm tumour on my cervix - apparently this turned out to be wrong and they said it was a loop of bowel which 'looked' like a tumour! It's all been a nightmare but eventually I had a pelvic MRI which came back clear thank goodness. 

I was then referred to a gynae to see if we could find out where the pelvic pain was coming from and she took a smear test on 12 December (my last one was almost 5 years ago as I'm 56 and it's every 5 years after age 49).  Unfortunately the results seemed to have been lost for a while because I didn't hear back until 26 January 2013 (6.5 weeks later) that there were severe abnormalities which my GP said would equate to CIN 3. 

I was booked in for a colposcopy on 31 January but the doctor said nothing was showing up when she put the dye on the cervix so she couldn't take a small (punch?) biopsy.  Also, my cervix was tightly closed and so she couldn't see anything higher up. I was then booked in for a Lletz on 12 Feb.  On that day she said she would be taking a sizeable sample (1cm) and was hoping that it would include the abnormal cells, ideally with clear margins. I asked if she would do a cone biopsy but she said she tended to use Lletz instead of cone in many cases.

I found out this Monday that the tissue she took didn't have any evidence of CIN at all which is why they now want to take tissue from higher up the cervical canal and womb lining. They need to see where the severely abnormal cells shown on the smear originated.  I'm booked for a diagnostic laparoscopy on Tuesday 26 February when my gynae is going to take another piece of my cervix (from the  top end?) and also samples from inside my womb using a general anaesthetic. I gather they are doing this because of the confusion over the supposed tumour they thought they had found last year.

I just wondered whether anyone else had abnormal cells higher up the cervical canal which didn't show up on Lletz and had to undergo further biopsies like me.

I'm now scared that there is something sinister going on in my womb - especially as they are linking in my recent history to this abnormal smear. 

Thank you everyone for your help - sorry it's so confusing!

Louise x