Smear: HPV positive with High Grade (severe) Dyskaryosis

After days of trawling through the internet after receiving a letter less than a week after my original smear (already having forgotten that I'd be getting my results via the post - thinking I was opening another bill) it stated that the cells found were HPV positive and that the cells found were High Grade (Severe) dyskaryosis and that if I'd like to discus this with my GP I should take the letter with me. 
I also received a leaflet detailing the Coloscopy procedure and what would happen during my appointment. 
I googled a lot - firstly how I'd caught HPV having already had the 3 lots of vaccination over 10 years ago... later than what they do them now as it had just become the thing... 

secondly I googled High Grade (severe) dyskaryosis... as High Grade and Severe in the same sentence on an official letter made me rather concerned...  I fell out with google as it was apparent that I wasn't going to find any clarity until I'd either spoken to the GP or attended the Coloscopy - which was the following week - less than 7 days after I'd received the letter. I called the GP for a telephone appointment as I couldn't justify a reason to attend the GP for a conversation. The GP rang me back and stated he didn't have much knowledge on the subject but basically told me what I'd already read... he told me what would happen at the Coloscopy and that I'd receive treatment if I agreed when at the appointment if it was needed... so I was no more knowledgeable than prior to our conversation. So I thanked him and waited it out... not nice but it soon came around. I talked and talked and talked about it - I became nauseous and nervous but talking really helped. I had a right to be concerned but no reason to worry. 
I attended the Coloscopy where she found a completely healthy cervix - no cells to be seen on the outside... NONE... having seen the images on google of a cervix with cells and looking at the screen with my Cervix I was reassured that no cells were present on the outside. 
I was given the LLETS treatment as a precaution from inside my cervix as she had explained that due to me having never given birth to a baby my cervix wouldn't allow her to get in much to see what was inside (where the cells may be coming from).

I was rather reluctant at first to have the treatment as all  I could see was a healthy cervix and she had confirmed it looked that way from the outside too. To the point she even checked all my details again to ensure she had the correct results in front of her. no sex no swimming and no tampax for 4 weeks she told me... (half the reason I didn't want it done ) 

I'm not going to lie - three injections into your cervix is painful (or it was for me!) the treatment was over and done with before I knew it and I had the oppertunity to inspect what she had removed to be sent off when she'd placed it into a pot!) I have quite a lot of cramping - as if I'm about to experience the worst period ever - and I presume it's not all over yet. But the experience of it is and I'm grateful that it's done with. 
 

A maximum of 4 weeks to wait to see my results but I'm confident in myself that I'm fine and it's all precautionary. Positivity and happyness is the best cure - and of anything was to come you'd need positive energy to survive. It might not work for everyone but it works for me. 
 

I just thought I'd share as I had read some right terrorising stories and thought mine was a positive one - to give you some hope that everything is okay in the end

EDIT required... as I know it's a nightmare not knowing... everything was fine and they've said I can continue with smears as usual. I had to have one after 6 months - which came back normal and now I'm back to every three years. They have advised that if I experience any symptoms to see my GP as they would usually reccomend anyway. 
 

hope this helps someone in that situation who is worried - it's not always a bad outcome. 
 

stay safe 

 


 

  • Hi Itsy and welcome to the forum.

    I was just reading through your post and wanted to thank you for sharing your experience with us. I'm glad the procedure went o.k (three injections in such an intimate part of the body does sound tough!) and I hope your recovery, minus the current cramping, continues to go well.

    Many new members who join want to know what will happen at their colposcopy appointments so I have no doubt your post will help many others currently waiting for theirs.

    Fingers crossed for good results in 4 weeks time Itsy.

    All the best,

    Steph, Cancer Chat Moderator

  • Thank you so much for sharing your story!

    I am due my colposcopy in 2 weeks time for abnormal cells. I keep getting myself so worried over it. I'm glad you have had such a positive outcome and outlook about it all, it is making me less anxious. x

  • I shared my story for a couple of reasons if I'm honest; 

    I haven't managed to find anyone who has actually come back and said what happens after having the same results / outcome as me! And I fully intend on doing that for this reason. 

    Those who have shared stories tend to be less positive / had a bad experience.

    I presumed that I was over reacting or being a hypochondriac... which I don't think is the case I feel the information we are told gives us a right to be concerned. Media and GPs have a massive input into stressing how important that attending the smear tests are and then when we get an abnormal reading we are told not to stress as it is pre-cancer. I do get that; and I do know what if we weren't pushed then the cells probably would escalate and then more deaths would occur as diagnosis would be too late... I understand this... however I just feel that our concerns regarding the results aren't taken seriously enough when we have taken attending the appointment serious enough in the first place! 
    Sorry! Rant over lol... 

    Just relax at your appointment - write down any questions because once your legs are in stirrups you'll forget everything you needed / wanted to ask. You should be given the oppertunity to ask what you want - I know I was before and after. Good luck and I hope you have a positive experience too! X 

  • Thank you, that's good advice. I had a phone call this morning and the hospital is able to bring my appointment forward due to cancellations, so I only have another day to wait for the colposcopy. I'm still terrified, but I'm positive that whatever happens next I will get through it. 

    Thank you for your support and kind words x

  • Hi im going through exactly what you did ..servere smear clear colposcopy waited a couple of weeks for them decide on what action to take next.....im waiting to go in for biopsy now.....how did your results come back?

  • Hi Isty,

     

    Thank you for sharing your story.

     

    I've just been contacted yesterday by letter regarding my smear and it was the same results you had as HpV positive and severe Dyskaryosis.
    I am 34yrs old and a mum of 3 kids which were all born by planned C-section. 
    During my last section just over 2 yrs ago I had a Merina Coil implanted and on not being able to find my string during my smear, I attended the sexual health clinic to assess if it was still in place. I had a viginal scan and it's moved down by 4cm, they want to remove it and replace it. This was to happen in 2 weeks time but when I received my letter from the hospital for an appointment at the hospital in 3 weeks time for a Colposcopy, I assumed it must have been to do with abnormal bleeding due to my coil. I had to call my doctor to discuss my smear results as nothing in the letter I had received told me why I needed the colposcopy. 
    Finding out my result from my smear had me fearing the worst and I've been so upset yesterday. We have gone into self isolation at the moment as a child at my daughters nursery has tested positive for COVID-19 so it's all I have on my mind at the moment. 
    Reading through your experience has assured me that things can go well even though it sounds awful to go through I know I can deal with this. It's just the waiting now that is making me anxious and the worry that lockdowns could affect my appointments.

    I obviously have the impending problem of my coil to deal with too so feeling nervous about the removal of that too with all that is going on with my body.

     

    It's crazy how lots of women have or are going through this and it's not openly talked about! I didn't know much about a smear other than it can pick up changes in cells in your womb. Since this experience has started for me it's opened up my eyes a lot.

     

    Wish me luck, I've got to wait until the 8th Dec to see what is going to happen. 

     

  • Hi Maria,

     

    how did you biopsy and results go?

    Hope you are well?

  • Thank you for sharing your experience I received a letter today saying high grade dyskaryosis and i am very worried my appointment is on the 21st Jan  - I am wondering if the menopause can make these changes to your body!

  • How did your appointment go? 
    I had the high grade serve after my smear and had the lettz treatment and biopsy. 
    Didn't reassure me tho. And now a 4 week wait for results 

     

  • Hi

     

    Just want to say, I too have had my letter back today. HPV with high grade severe dyskaryosis. For me I had a smear 12 months previous with low grade, but has managed to go from low to high in a year. Which from everything good old doctor google has told me, doesn't make sense.

    Immediate sense of panic thinking about my two children . Followed by calm. I'm so worried with covid etc that appointments will be delayed.

    What's everyone's experience been so far with appointments.