Colposcopy follow up and cin3

[Mumof31992]

Hi all, first time thread here and sorry might be a long one!

I had a smear Feb 2023 and results came back positive HPV with borderline changes went for a colposcopy and they said it was fine.

had smear again March 2024 results borderline with HPV positive again. Had colposcopy July 19th and they did a punch biopsy as she said the cells were more abnormal than borderline so they wanted to be sure.

received a letter Friday saying follow up colposcopy with no results letter. I phoned the colposcopy clinic and asked the secretary if she knew what the results were as I weren’t sure why I needed a follow up call, she said they were cin3 and my appointment is 30th August and they need permission to say what procedure they would need to do.

I ended the call hoping the results letter would come Saturday (today) and went about my day as usual.

Ive woke up today anxiously waiting for the results letter to come, which it has not. I know I’m over thinking it massively and have done too much googling - not great I know! But does anyone know what procedure they are likely to do? I am more anxious about what they are doing and the fact that I don’t know than the actual procedure if that makes sense?

i know so many people on here have positive stories about a procedure getting rid of it - does not stop the worry though!

feel like I’m massively masking my real feelings, keep telling everyone I’m ok, but not sure I actually am?

Hi
You'll have the lletz procedure I imagine which is a hot wire loop which burns off the cells
Not pleasant but not the end of the world

yes as I say I’m not that bothered about the procedure think it’s just the unknown, there are obviously a lot worse things in the world! Thanks for your reply

I had lletz in 2008 to clear a widespread area of CIN3. Had clear smears ever since - initially they were six-monthly, then yearly, and now back to the usual three-year schedule. I hope it's as straightforward for you - it's a worrying time, I know, but you're in the system now and they'll sort it out.

If you log onto the NHS App the results may be on there.

I ended up having 3 LLETZ, OP, over the space of maybe 15 years, I'm not sure of the dates. The first one was 20 years ago. By the end I was fairly blasé about checks and procedures but at times I was very upset and distraught, including at appointments and so on. Bring somebody kind with you. I've had 2 colonoscopies too and I found that I was treated with more sympathy for that. I'm in Ireland and this was in different hospitals according to where I lived at the time.

Yes fortunately my partners coming with me and his amazing! I phoned today as still haven’t received a letter and she said that it did not say on the letter what procedure as they need to do further investigation, not sure what this means? I’ve gathered from everyone else’s stories that it says on the letter about a LLETz procedure - although maybe wrong ?

and thank you downloaded nhs app last night just waiting to verify ID

I had CIN3 found by colposcopy and biopsy, after a smear found HPV, and they did a LLETZ - I think that’s the standard treatment. It wasn’t the most pleasant procedure though I actually found the biopsy worse. The aftermath was a bit grim - bleeding for about 4-6 weeks. I had a follow up smear six months later and HPV wasn’t found so that’s me ‘cured’ apparently. I recently had my first smear after this (ie after 3 years) and I’m waiting for the results now.

It might not say lletz as there are a couple of types of procedure. One is lletz, there's cold coagulation (burns abnormal cells) and cone biopsy is another. It's likely your consultation would want to do the colposcopy before they decide on treatment options.

For what it's worth, I've had lletz. It's not pleasant but by no means unbearable, quick and response stats are good. If you do get it or want more info on what it's like happy to share more.

I had CIN3 cells removed in November and a second treatment in February to remove a clear boundary around the affected part.

I'm not sure of the name of the procedure but they burned the abnormal cells off and then cauterised the area. The first procedure was lengthy but the second one only took 10 minutes or so, presumably because most of the cells had already been removed first time.

My cervix was numbed with a spray that contains adreniline, it does make your heart race and I had palpitations and it made me a bit wobbly on my feet afterwards but I didn't feel any pain.

The procedure was uncomfortable but not painful. I did have a bit of bleeding for a week or so afterwards.

It'll be let's where they basically burn the cells off. They place a dye on your cervix and they can see the abnormal cells. They'll give you a local into your cervix then burn it off and you won't feel it. You'll then be fine to go home but are likely to get brown/black type discharge for up to 5 days later. They
Send the cells off to be checked and to check they get a clear margin then you'll be reviewed in 6 months I think

You're in good company OP! Just adding that I've had CIN3 followed by LLETZ, then tested clear of HPV. I was scared of what they might find, so I took a valium before I went for my colposcopy (cocodamol would do in a pinch) and didn't find the biopsy anything more than uncomfortable.

I had the LLETZ under general anaesthetic as my abnormalities were quite extensive, but it was a day procedure and no problems healing, or in subsequent smears.

They do these procedures all day every day I'm 99% sure your imagination will be the worst part of it.

I had CIN3 and a lletz (under general anesthetic) in 1998 ish. I then had annual smears for 10 years. Then back to 3 yearly. I went on to have 2 full term pregnancies. Although, I was monitored and did have cervical scans and progesterone for another issue. I've haven't had an abnormal smear since and never tested positive for HPV .

Thank you all for your responses so far! Very reassuring! Still had not received a letter so just ohoned and they said it should be coming and she said the letter says cin 3 and they would like to discuss the results - is this normal on a letter?? I’ve just looked at my history on the app and it says I have high risk HPV didn’t even know there were different risks to HPV

Cin3 usually is high risk HPV. Its graded Cin1 to Cin3 based on how abnormal the cells are.
HPV is what can cause the abnormalities, and the CIN rating is how abnormal they are.
Most likely the letter will give you that result and invite you back for follow up and to discuss treatment.

There's different strains of hpv and there are a couple classed as high risk. Most women with cin cells will have the high risk hpv so that's quite normal op 🙂

Thank you! Very reassuring. I’m not normally a worrier and from research, I do not understand why I’m worrying, seems a really straight forward and normal thing that people go through all the time! I’m always that person that’s like ahh can’t do anything to change it let’s not worry, but find myself researching any spare minute I have. I’m sure everything will be fine and I’m very much over reacting.

thanks everyone

Hiya, I know this is an old thread, I had LLETZ treatment yesterday and still freaking out, had HPV high risk and servere cell changes on my smear results, so got sent to have colposcopy and LLETZ treatment, I now have to wait another 4 weeks for results. What will the results tell me? I just want to be able to sleep with anxiety 😩

The figure they gave me was that over 95% of people are completely cured after one LLETZ treatment. In all likelihood, that's what will happen for you. I was in the very small minority who needed two treatments, but I've had no problems since (17 years and counting). You'll have yearly smears for a bit to keep a close eye on things as well. Try not to worry - easier said than done, I know.

@Kgog
They confirm what the cells were, cin 1 2 or 3 and then they tell you if they got them all, as in are there enough healthy and normal cells all around the abnormal ones. You'll likely have a follow up at the same department 6 months later. I had cin 3 cells removed around 10 years ago now and after the treatment all was removed. It's highly effective 😁

Oh and then I think I went yearly for smears until I'd had two normal results back to back and now I'm just back to the normal nhs programme call up

I got my results today, they got all the cells yayy! I had CIN2 and CIN3, I have been referred back to my usual GP for a follow up smear in 6 months 😊

Brilliant news! Thanks for updating. So pleased for you 😊