HPV positive but normal 3 year recall-now severe dyskaryosis

Hi

i had a smear 3 years ago, it came back HPV positive with low grade dyskaryosis, had a colposcopy, which she said was clear-no abnormal cells found, and put me back onto 3 year recall.

i have just had my latest smear results this morning which says HPV positive with high grade(severe) dyskaryosis

I wasn't aware at the time, only until reading it recently, but shouldn't I have been put on yearly recall when it was first found to be positive?

or can the colposcopy examiner see that there is actually no HPV there? Please help I'm confused and now very scared I feel like they have got it wrong and I should have been seen yearly, and now because I haven't, it's been able to get very serious. 
My colposcopy is booked for a week and half away, which I received the text for, before I even received my letter saying what was actually wrong, which I think is very wrong to do.

 

  • Hi Chloe, I had the same experience as you in 2016 - HPV positive and abnormal cells. I went for a colposcopy and then was put on 3 year recall. However last year I was pregnant so couldn't go and I've been worrying ever since. I also looked up and realised I should have been sent yearly or so it seems because of the HPV. I have my smear booked for Monday but for the last three weeks have had continuous bleeding so now I'm extra worried and I know they probably won't be able to do the smear either leaving me to worry a few more weeks :( please let me know how you get on. I might just beg them to do it Monday I can't wait any longer it's driving me insane! 

  • I will let you know how I get on, surely there must be a reason for us been put back on normal recall, as if it was guidelines then the colposcopist would know automatically HPV present yearly recall, and mine knew I had because she talked me through having HPV. 
    I am going to ring my doctors and the hospital first thing Monday to see what my last result said and why i wasn't put on it, the hardest thing is getting the letter today on a Saturday and now having to wait a couple of days to be able to get some answers!

  • I will go anyway Monday and ask why I had to wait 3 years also. Surely between us we should be able to find some answers. Good luck x

  • You too hope everything goes ok and hopefully someone can maybe come back to us with a answer on here x

  • Hi

     

    did you go for your smear today? x

  • I went, but I was told it can't be done as you have to wait 16 weeks after having a baby now. I'm sure it was 12, even 6 in some cases anyway nothing I can do about it I suppose. I asked for more info and expressed my worries. She gave me a leaflet and tried to say that because the cells came back as normal from the colposcopy biopsy that it didn't matter that I was HPV positive. However on the next line of the leaflet it does say that you will be invited back within 12 months to check the HPV has cleared. So really I'm back to the start - no smear, conflicting information and a head full of worry! Did you get anywhere today? X

  • It is guidelines that been HPV positive should be yearly recall! That's what it states!

    i went to my doctors this morning to try and speak to someone, which I had to make an appointment to do, but there is none before my appointment for colposcopy next week anyway, so I asked for the letter the colposcopist wrote after my last one with my results, the letter stating I had "high risk hpv" although no abnormalities seen, put back to 3 year recall. 
    even the receptionist looked At me as if she agreed I should have been seen yearly.

    I then phoned the colposcopy department where I had it done last time, to see if they could give me answers, she couldn't and said all she could do would be get my notes, give them to a doctor and they would be in touch, but it "wouldn't be today"

    so looks like I will just have to wait and ask the question next week at my appointment  

  • Same, the nurse hunted through my records to find my letters and they said I'd be back on 3 year recall. She didn't seem very concerned which very very slightly made me less worried although I'm still sat here googling and almost in tears about it so she hasn't put my mind at rest as I've got another month to wait now ️

  • It's awful isn't it :cry:

    try not to worry too much altho I know it's easier said than done as I am terrified too, but try not to google x

  • I found this on another chat - it may be of some help? I just can't seem to find a definitive answer from anywhere!

     

    Cervical screening is done to look for abnormal changes on the cells of the cervix. It is done so these abnormal changes can be monitored or treated at an early stage. There is a risk that high grade abnormal changes if not treated can develop into cancer in some, but not all women. Low grade changes (as in your case) are more likely to revert (go back) to normal on their own.

    Your cervical smear detected a low level of abnormality (low grade dyskaryosis) in some of the cervical cells. The next step for you now is to have a colposcopy  examination done to have a closer look at the cervix and examine the area of abnormality on your cervix causing the abnormal smear.

    If the colposcopist finds that there is an area that may be abnormal on your cervix a biopsy is taken. This is to have a closer look at the tissue and abnormal cells. Depending on these results another classification system is used to describe the level of abnormality. This is called cervical intraepithelial neoplasia (CIN). If the low grade dyskaryosis is confirmed on biopsy it is called CIN 1. In this case, you are likely to be offered a 'wait and see' option to see if the level of abnormality resolves (reverts back to normal) itself over a period of time,so you would have a repeat smear in a year.

    If the biopsy shows CIN 2-3 this equates to moderate to severe dyskaryosis. If you had CIN 2 and 3 you would be offered a treatment to sort out the abnormal area.   

    If the colposcopy is clear and no abnormal areas are seen on the cervix you will be discharged back to normal recall (smear in 3 years). In this case the low grade dyskaryosis probably returned to normal.

    The majority of abnormal cell changes on the cervix detected by cervical screening are caused by HPV ( Human Papilloma Virus)  This is a common infection and it is estimated that most people who are sexually active will get HPV at some stage in their lives. Most people will have no symptoms and their immune system will clear it up in a year or two without them ever knowing they had it. It is not possible to tell when a person got HPV or how long they have had it. Abnormal cells caused by HPV can go back to normal if a person’s immune system clears HPV. This is more likely when the changes are low grade.

    Cervical screening is very successful so as long as you go along for your appointment and follow the advice given everything should be okay.

    I see that one of our moderators has put you in touch with another forum user in a similar situation. I hope it helps.

    You can always give us a call if you want to talk this through. Our number is 0808 800 4040 and we are hear from 9am to 5pm Monday to Friday.