Hi! I'm new here, this is my first post so it could be loooong!
I had CIN1 and CGIN detected at smear test. I've had a colposcopy back in October (which basically confirmed the presence of those cells) and a LLETZ procedure done in January. I've just been told that the LLETZ didn't manage to remove all the cells, and that there is still both CIN1 and CGIN left. (Hospital has never graded my CGIN, which I find puzzling. Any idea why they would do this?)
The meeting to discuss the next step won't be happening until the end of March... This delay also happened after the colposcopy, and reading between the lines it's as a result of covid (local gynea department has had to move from main hospital building and halving the usual work hours...)
I was just wondering if anyone had any experience of this, and what was the next step for you? Positive and negative experiences welcomed! I feel that this is a lonely situation to be in, especially in lockdown...
Thanks.
Hi Man.on.the.moon,
My CGIN was confirmed by letter 2 weeks after colposcopy. They informed me it was high grade but not about margins. I called and left the Secretaries a message to clarify some information in the letter and asked about margins and received a phone call from my consultant. He let me know that they got clear lateral margins but unclear endocervical margins. CGIN can extend higher up into the cervical canal. My case is bekng discussed at MDT tomorrow but I have already let the consultant know that I would prefer to get clear margins and will probably be scheduled for a further LLETZ. Don't be afraid to ring and ask, they will know your grading and will have some idea of further management. They're just not that good at putting it all in a letter. Maybe they try to keep it simple for us as not everyone has the same level of medical understanding. If you ever need to talk don't hesitate to message me xx
Hi man on the moon,
I don't have cgin, but have CIN III and have also found out I'm being discussed at the next MDT meeting mid March.
I echo what Kult has said about ringing up your colposcopy clinic. I rang yesterday and this morning (as yesterday I ended up more confused and upset).
I spoke to the same lady both times and today she got a colposcopy nurse there and then to interpret my results and explain everything to me. I can't tell you what a relief it is to know what's going on and the outcomes that might be decided.
The lady also said I can ring up as many times as I want, which was really reassuring as I felt embarrassed ringing a second time and like I was wasting their time. Xx
Thank you both so much for replying. Weirdly, I hadn't realised how lonely and isolating this all is until you replied and I felt such relief that someone else gets it!
I'll ring the clinic on Tuesday. It's a relief that you both talk about waiting for the MDT clinic too... It feels so so long to me, after waiting a month for my LLETZ results (and only getting them because I phoned- I'm yet to get a letter.) The staff at the hospital are great but I know covid has had an impact.
Thank you again! X
Sending you lots of love. People don't understand what we're going through when they haven't had a similar experience xxx
