Hi All, I am hoping someone can offer some advice on my journey/situation as I’m really struggling mentally.
I was diagnosed with high grade hpv and cin2 and cin3 last summer and had a LLETZ in August. I had a check up in September and we discussed a further LLETZ versus conservative management due to unclear margins and after a colposcopy at that appointment, I opted to wait as i found the LLETZ and biopsies really hard and traumatic and my body needed a rest. She said this was safe to do so.
Fast forward to January and my follow-up colposcopy and smear. She said she found hpv changes and did a smear and is now waiting for the results and would do any further lletz under general due to the fact they’ve already taken so much (I had a top hat excision) and on the screen my cervix did not look great and she couldn’t get in and see. It was so painful
I’m now in bits as I feel like I’m back to the start and that my life has been on hold for a year now and physically and mentally it’s all taken it’s toll. Has anyone been through anything similar with the cells returning/changing so quickly?
For background my cells developed to cin3 in under 2 years after a clear colposcopy for borderline changes in early 2020….
Hiya, I had a smear February 2022 with no cell changes found. Paid privately 9 months later to have a repeat smear check up and I now have high grade CIN3 and am awaiting my LLETZ. noones explained to me how this has happened so quickly but clearly they can progress quicker than the norm…
I’m not an expert but I imagine if you didn’t have clear margins after your first lletz then it may me those leftover abnormal cells that are showing up again now. Fingers crossed they can get you in quickly and get them all checked out and removed as necessary.
This whole process has taken a ridiculous metal toll on me (been ongoing since my smear result at the start of December and I won’t get my treatment until mid feb) so I totally understand how hard it is. Absolute best of luck xx
Thank you so much for your lovely reply. It is the worrying that’s the worst bit. I have started to look at private options as i have so much going on! I hope the treatment goes well… here for any advice or support on that xx
Hello I’m in a very similar position. I had high grade CGIN found last year and had lletz under GA, they confirmed clear margins. I had my follow up smear/colposcopy end of January.
I’m still waiting the actual results from the smear but HPV changes were seen at the appointment. As I found out being CCd into a letter from colposcopy to my GP, I can’t look at the screen or anything so didn’t see how big the area was. But I have to wait for the smear results before they’ll decide what to do next.
It is this horrible limbo waiting for the result as you know there’s something going on, but not the extent. So I totally sympathise with where you are, I too am struggling mentally with it. I’m trying to stay positive and think it might just be borderline changes, but it is hard. I’ve called my colposcopy unit to ask if they can give an estimate on how long the results will take to come through, I’m waiting for a call back for them.
Mine also went from borderline with clear colposcopy in 2019 to high grade CGIN last year. I’m happy to talk and be a sounding board if you need, as it seems like we are unfortunately in the same boat.
Hi There, thanks so much for your message, its good to talk to other people. I am waiting for a call back also as I have seen my smear results in my doctors records and it says negative which I don’t believe and I am still in a lot of pain after the colposcopy 2 weeks later. Added to that the naproxen I am taking for the pain is now making me poorly so I’ve had to stop that so the pain is even worse… I am also happy to chat anytime its so hard xx
I managed to get hold of someone and they’ve said my results are back. She wasn’t able to give me the results over the phone. But she’s going to get her colleague to give me a call tomorrow.
Ohh, yes I can see why you don’t belive it, when you’ve been told there’s changes. If I were you I’d ask for a colposcopy and biopsy for them to check the area they saw changes in. It might be that they offer that anyway due to them seeing changes.
Sorry to hear that you are in pain still. Have you called the colposcopy unit to talk about the pain your experiencing? To see if they have any suggestions or thoughts on it?
Yes I agree and will be asking for this. I have tried to ring and left a message, it says they make calls back on a Wednesday now so looks like more waiting xx
Hi @creativelady22 and @Letsdothis how are you getting on?
Hi lovely, I have a follow-up appointment on 21st to go back in… I had a letter uploaded to my doctors records today to say hpv in vagina walls and on transformation zone. So, I really don’t know whats next but have an appointment within 2 weeks… how are you getting on? x
Oh gosh I’m sorry to hear that we’re there any abnormal cells or was it just HPV+?
I’m currently waiting on my smear test results (2 weeks tomorrow) which is 6 months following LLETZ. I’m still getting twinging symptoms from the smear!
I don’t know I havent had the results and just been called for an appointment… Yes I am pretty much in the same position - the colposcopy and smear 2 weeks ago was awful and still suffering xx
Hello. So my smear came back HPV negative, so they won’t see me back in colposcopy for a year when my next test of cure is due. I asked about the letter that was sent thst said changes werr seen and they said they think given the smear was clear it might just be new skin growing after the lletz. So little confused as to which to believe at the moment, so waiting for the actual letter to come with the results encase there’s any more info. But right now, I’m not comfortable waiting a year, so might go private for another smear or try and push for a colposcopy given that false negatives can happen on smears, and changes were seen.
I didnt think it could go from clear to high in such a short time i was told that never happens.
If it does that quick then why do they ask for us all to come back sooner say for example 3/6 months rather than a year.
Also i have been told if there is a high grade xhnage to turn into the the nasty stuff it takes years or is this not true aswell