Hi...Anyone else with CGIN

Hi ladies

First time posting...

Ive been having colposcopies for around ten years now as always had abnormal smears with hpv, so eventually the team decided i should have the letz. I had this at the beggining of september and it was so traumatic i nearly passed out! 

Anyway the results came back id got Cin3 and high grade CGIN which came as a massive shock because ive been gojng to hospital for years now and nothings happened. 

Apparently the CIN3 has been taken away but not the Cgin which im going back into hospital for on tuesday to have a large piece taken away under a general anasthetic.

Im just really anxious of the results more than anything...anyone else with cgin? Im worried ive had this cgin for ages and theyve not been picked up as theyve never noticed it on the colposcopies...and if it wasnt for having the letz it would have been left.

Theres definitely alot going through my head at the moment. 

Xx

Hi. I'm not quite the same but I had CIN 1 and low grade cgin 5 years ago. This was removed with 1 Lletz treatment.  

What abnormality has your smears shown for last 10 years? My original was a borderline endocervical and at colposvopy he could see a tiny area which he biopsied.  I'm assuming they've never seen anything showing on your cervix at colposcopy? 

 

Hi Tillyrose

Thanks for replying

No nothing has ever been seen even when i had biopsies. All smears have been borderline changes nothing that ive been worried about so after ten years id just got used to getting the same result. Untill now which came as a shock.

Its definitely a nervewracking time isnt it....getting slightly anxious about tuesday.

Its nice to talk about it here..i asked the dr loads of questions and she couldnt answer any of them 

Hi

As you can see from my signature I've had CGIN. I have had normal smears all my life apart from the most recent. I wonder what made them decide to do the LLETZ now?

Hi!

They decided to do it so that mabey theyd remove whatever borderline changes there were so that hopefully i wouldnt need to go back again, since id been going for 10 years its a long time to not do anything at all.

Did they offer you a hysterectomy? Would they usually offer one with cgin? X

Hi Becky, sorry you are going through this worry. I had LLETZ for CGIN last month and I find I have to read everything! This website has been really useful and supportive. I had always had normal smears until the one I had in August came back with "?glandular neoplasia of the endocervical type". It was an unwelcome bolt out of the blue, I'd never heard of CIN or CGIN, was not experiencing any symptoms, and it was all very upsetting.  

The LLETZ was actually fine, the 5 week wait for the results was pretty tough though. It's quite hard not to catasrophize which is why this website is so good for "earthing" your fears as you realise you aren't alone. (It turned out quite a few of my friends and people known to me have had treatments, it just isn't talked about I guess).

After a lot of reading of articles, medical journals online, websites etc you try to sift the info and get a proper picture. The clinic was great, I still have questions though and the results letter was quite literally a couple of sentences. I went to see my GP as I haven't had children yet (I'm 39). She was lovely but didn't really have the answers. My smears she says have never shown as hpv positive. I didn't even know they checked smears...or from reading online it looked like they did if there were borderline abnormalities (which I hadn't had ever anyway). Mine is high grade CGIN...how long for or when it went through low grade CGIN I don't know! I've never missed a smear but CGIN seems to be more tricky to detect.  

I am assuming that at some point I had hpv and that perhaps I fought it off and it became dormant but that some major stresses/bereavement a few years ago may have triggered it? (I'm speculating)....I don't think they really know how hpv works yet. Apparently it is usually hpv 18 that causes the CGIN abnormalities. I would like to know if I have a high risk hpv but it isn't tested until the 6 month colposcopy and is called a "test of cure". 

CGIN is much less common than CIN. I know my cervix at colposcopy showed no obvious visual abnormalities. No CIN is mentioned in the results letter. CGIN can be present with CIN though. Which is why the CIN3 has been whipped out but they want to be sure to have taken away the CGIN too.  

CGIN is treated more conservatively now than it used to be, I read some journal from the 90's and was so worried that it meant I would be told I had to have a hysterectomy! I asked the nurse who said no, it is not the case. They've moved on in their thoughts about treatment by the looks of things especially if you haven't had kids or not finished a family yet. The newer articles/info seem to be much more positive.  I think in the past they thought CGIN started further up but now they think both types of cells start to go wrong in the Transformation Zone. I remember the colposcopist syaing it was good she could see my TZ. As you age the TZ retreats further inside your cervical canal. It's a fair bit of joining the dots together and trying to think positively! 

I have been looking at ways to make sure I'm boosting my immune system and do all I can the next 5 months until the test of cure and hope the cells are all fine and no hpv.  

I hope the procedure goes fine on Tuesday, big hug. xx

Hi Ingle

Thankyou im getting quite nervous about it now.

So youve had one lletz treatment? And now have to wait 6 months for a colposcopy? 

The waiting for results is awefull isnt it...im hoping as ill be in hospital the results might be quicker..its usually a 4 week wait!

X

The reason they told me I had to have a hysterectomy  (There was no other choice) was because after both LLETZ treatments, I had high grade CGIN completely covering the biopsies. Plus I had completed my family.  It's not the case for everyone. Good luck for Tuesday.

Hello, yes, I had one LLETZ early October at the hospital at the colposcopy appointment itself (UK).  They said a 3-4 week wait for the letter..... it was 5! Waiting is not fun no!

I knew they thought they knew what it was from the smear test. I also knew they didn't see anything obvious at Colposcopy. I thought that was good and maybe it was all a mistake! but then from what I read in those 5 weeks of waiting it seems CGIN is quite often not visible at colposcopy and harder to see than CIN which makes sense since CIN is found in the cells on the outside of the cervix. 

The letter I received said high grade CGIN but that it appeared to have been completely removed. When it has clear margins like that you go back in 6 months usually to the hospital rather than the dr's and you have another colposcopy and smear and test of cure to see if hpv is there or not. If there aren't clear margins then they do a second LLETZ or Cone. Are you having a Cone as it is under GA? 

I think like anything medical everyone is different so the consultants will take your individual needs, desires, age into consideration with the treatments offered but from what the nurses said to me and from what I read they don't think CGIN is more agressive than CIN it's just trickier to spot in the first instance and can be trickier to reach sometimes. It is also rarer and so less study and knowledge has yet been amassed as it has for CIN. 

I totally understand why you are feeling nervous for Tuesday x it must feel like ages away but it is Sunday night already, try to do nice things for yourself to distract yourself. xx

 

Oh so thats fairly good news for you then..thats fab! Id definitely try not to worry if it came back with clear margins.

Im not sure on the lletz...i just saw the consultant write down large removal. Ill ask tuesday morning if i get to talk to a dr first. 

Xx

Hi Ingle,

I'd be interested to hear how things are going for you this year and if you've had your test of cure.