An article published by ncbi states that reoccurence of CGIN is three times the rate of CIN. So if 90% of women never have CIN changes again then 70% would not have CGIN again? My maths on that may not be perfect. It harder to find thorough statistical studies in relation to CGIN. Please do swear at this virus all you like.
Yes CGIN seems to be a bit more complicated. but again is it because of the difficulty of the removal of cells as they are higher up and sometimes a simple Lletz cannot reach it that the reocurrence rate is higher or because of other factors? Some women seem to have only CGIN with no CIN meaning abnormalities started higher up which I believe is less common, but most women start with CIN that works its way up causing CGIN . Sometimes I wish I had the time to study all this properly I have so many questions, and time with doctor never enough for all
Good luck everyone
I braved it and called. NOTHING BACK.
I’m one of those unusual cases with just CGIN. CGIN has a habit of skip lesions too. So they may think they have clear margins but it’s skipped a bit and is lurking elswhere. I think this is why they used to recommend hysterectomy. Now they monitor closely for 10 years following treatment.
Oh Eleanor i’m so sorry. That is ridiculous.
Yes exactly the same here, I have been recommended a hysterectomy after CGIN turning into to CC he isn’t happy it was stay clear so just waiting for more biopsy then will go for hysterectomy. It’s ever so complicated xx
Anyone have there results from there test of cure yet ? I’m trying not to think about it but it’s stopping me sleeping thinking my cc is back Driving me mad. Good luck ladies xx
I think if you have had children they recommend hysterectomy. I’ve been told I can try for a child but that when I am done they will recommend hysterectomy. I suppose that makes sense. If I have a child I want to be around for them growing up. I hope your biopsy results are clear when you have them.
I spoke to one of the colposcopy nurses today and can finally breathe. She said my smear was negative and that I should have been called back for a smear in 12 months time not 6 as the letter states. An administrative mistake. That I can have IVF and she is going to rewrite my letter to say this and rearrange my follow up TOC smear for 18 months post treatment as it should be. I’m so relieved. How is everyone else getting on?
This is seriously amazing news ! I’m so pleased for you that you can get on with your IVF journey, luckily I had my children young, I’m 29 so feels strange to be thinking of a hysterectomy my girls are 11 and 7 so I’m very blessed to have them. No results yet still checking the post daily x
This is AMAZING!! Congrats! Were you HPV negative? Still no news here of course haha!
Oh wow, I’m so happy to hear this. I’m over the moon for you lovely. Please do let us know how you get on with your wonderful new journey too. Xx
I’ve written elsewhere but my but my cervix had done a runner at the test of cure.
She couldn’t find it and I’m going to the GP tomorrow.
Might be age? It definitely was there before Lletz and quite low.
I’m not very happy about that really
My Lletz was only the minimum you can have, about 1cm
I called again and had my results read out to me. HPV+ and CIN 2 again. So the cold coagulation just burnt off healthy cells. They can’t find the CIN 2 during colposcopy and biopsies normal but I think the next plan is to just blindly do a LLETZ. I’m waiting for a call back from my doctor to change hospitals.
Following on for what I replied in your other thread, I think you’re wise to ask to change hospitals, as it sounds like not only have they messed you around, but that you will not have confidence in them to do the right thing for you, which is enormously important.
Yes I think you won’t really trust them now. Best to go elsewhere
Yes HPV negative. I will certainly come back and let you know how I get on and check in on all of you. Thank you all for your support.
Eleanor that’s not the news you wanted. I’m so sorry. I agree with the others that a second opinion is needed. Even if not with another hospital definitely a different consultant. I have been treated by two different consultants in two different local hospitals. They both work between the two. You can of course elect to be treated wherever you like. Additionally if you wanted to raise concerns about the care you have received you can speak to PALS (Patient and Advice Liason) who should be able to help you moving forward. Really hope you get some answers soon.
Hey @eleanor_rigby Oh bless you must be stressed, I’m not sure on your full story, I wonder why they didn’t just do a lletz in the first place ? Strange just a shame you have to go back for more treatment good luck keep us updated x
Hi Frankie thank you for your message. I have a long history of HPV+ and low grade smears with never any treatment but in February I had a moderate CIN 2 smear. However, at colposcopy they said they would do a LLETZ but then when I got on the chair they couldn’t see any abnormality. They did biopsies and these came back normal just HPV+. So I was discussed at MDT who gave me the choice of repeat smear in a year or cold coagulation treatment. I don’t think LLETZ was suggested due to the fact they couldn’t see anything abnormal.
I chose the treatment but with that treatment they destroy the cells they aren’t able to test them. My 6 month smear in October is still CIN 2 so I am at a loss as to where these cells are hiding!
That’s frustrating for you that you can’t really get to the bottom of where the cells are when you know full well they are there. So have they suggested a lettz now ? Maybe it’s the best way forwards I really hope you get it sorted x