I was just wondering if anyone had any similar experiences. I have my first lletz 11 years ago (when I was 20) for CIN 3. I was then clear up until 2 years ago when I was CIN 3 again. Another Lletz procedure which was 2 years ago and have had clear smears and negative for HPV. I have ust the results back from my yearly smear and it is abnormal but negative for HPV. I am very concerned about this as I thought if you were negative for HPV you didnt get abnormal cells?? has anyone else come across this? the consultant has said to leave it for 6 months and then get another smear. Should i push for a colposcopy now or wait?
I am so worried and can't bear the thought of another lletz as it was horrendous. Any advice would be much appreciated!
I'm sorry you've had abnormal cells come back again, what a worry for you. Regarding whether you should ask for another colposcopy now, if the changes are mild then 6 months will be ok, although I know it feels a long time to wait. Mild changes can go back to normal and hopefully this will happen for you (although I understand that can be hard to believe when you've been through this twice already). If the changes are modertate or severe if it were me I'd push for a colposcopy now. I know what you mean about LLETZ, I agree that it's horrendous.
As for HPV I totally understand how you feel and why you're confused. I had LLETZ for CIN2 and then 6 months later abnormal cells were back. A biopsy showed that I'm HPV negative and yet the cells have changed again after LLETZ even though the margins were clear. There's so much obsession with HPV these days and it does scare me because my last biopsies showed I'm HPV negative yet I also have CIN1. I haven't been able to get a decent answer as to how this has happened. I don't smoke, I eat well, exercise and I'm not overweight. Even though I havent had a normal smear since the LLETZ (or in fact for years) they've still left me for a year before testing again because I'm HPV negative. Apparently there is a very small percentage (1% I think) of CCs that are HPV negative, so I find this whole HPV business worrying.
So yes it is possible to have abnormalities and be HPV negative, although there isn't much information around. I can't give any specific advice as such but can relate to how you feel if it helps to share this.
Hope you're ok, take care x
Thank you for your lovely response. I am keeping my fingers crossed that it will go abck to normal but as oyu say i do find that hard to believe. i was clear after the lletz orgainally so what confuses me is how the smear is now abnormal but not hpv positive, where did the abnormal cells come from?! I need to speak to my doctor but i am waiting for his letter to see the exact details.
Seems for you like it is a waiting game too- i presume they are expecting you to be back to normal again as you are also HPV neg?
This waiting game is awful isn't it? Having to wait for months for the next test is a nightmare. I try not to think about it, but if I'm honest it is there at the back of the mind a lot of the time.
They mentioned when I had my colposcopy that the lesion 'isn't very big' and that if the CIN doesn't go away they'll do another LLETZ (which I dread the thought of). I think in my situation they don't know what's going to happen because I haven't had a normal smear after the LLETZ. I asked lots of questions at the consultation and the doctor said they didn't know but that I would be monitored.
The good thing is that you have had clear smears until now. It may not feel encouraging, but it is. Mild abnormalities can go back to normal by themselves and with your smear it may be that the test was done at a time when the cells were changing (which they do all the time, they go through a cell life process).
Lack of HPV is certainly a mystery though. I do wonder which strains of HPV they test for on the NHS, whether it's a wide variety or just the high risk varients. I guess it's possible that if they don't test for the low grade varients that a 'HPV negative' result could mean just negative for the high risk types. Having low grade HPV could cause changes. In my situation I haven't had a relationship since before all thid started so I've not come into contact with a new partner. It's very baffling to say the least.
Talking to your doctor is a good idea, I hope you get your letter soon.
Take care x