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HPV Positive and high grade (moderate) Dyskaryosis

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oms92
HPV Positive and high grade (moderate) Dyskaryosis

Hi all

Had my smear results back two days ago and been advised that I need a Colposopy after a smear 8 weeks ago.

It was my first smear (I'm 27) and for the past two months I've had spotting between my periods and period pains (stomach and back) when I'm not due on. I've basically convinced myself that I have cancer from Googling too much!

I called my local hospital because I can't wait for the letter and they said the next appointment won't be until mid-late December!!!! I'm totally panicking and thinking of going private because I feel like the anxiety and worry is going to be extreme over the next few months. I've literally not slept since I got the results. 

Has anyone been in a similar situation and is now ok?

haylesd

Good old google! The only sites you should use is this and the NHS. The fact that they do not want you urgently can be a good sign. However if you really cant wait and can afford then go private and put your mind at rest. I was lucky all my appointments were made very quickly.

I cant give you any answers to your diagnosis but this group is great for support. 

x

 

  • 5th June 19 - smear
  • 15th July - High grade dyskaryosis/?invasive carcinoma 
  • 23rd July - colposcopy, LLETZ biopsy taken
  • 6th September - Met the consultant to discuss results. Stage 1A2 confirmed, unclear margins on biopsy. Unable to perform 2nd LLETZ due to alot of cervix being taken away on previous biopsy.
  • Hysterectomy booked for 15th October
  • Pre-op done 11th October, all good to go for next week!
Total Hysterectomy completed with ovarian conservation. Waiting for pathology report.
roodlechoodle
roodlechoodle's picture

Hey! My experience was very similar to yours. And im also 27!

I had my smear end of May and it was 8 weeks before i got my results - high grade dyskaryosis. But the same day I got my letter, I got an appointment made for a colposcopy, for the week after. 

The Dr doing the colposcopy said my smear showed precancerous cells and they would perform a LLETZ then and there. 

This was 3 weeks ago now and so hoping to hear the results of that any day now! The waiting is torture so I dont blame you for wanting to go private. 

I also had had stomach and back pain between periods and also bled after sex - but I dont know if they are/were linked. 

The fact that they are happy to wait until December for your colposcopy sounds reassuring, as I think they would get you in a lot quicker if they thought it was necessary. But I totally get your worry.

I was only waiting a week between my smear results and colp and i went crazy. And now waiting for LLETZ results, Ive turned into a mad woman. 

It might be worth phoning the number on your appointment letter to see if they can get you in earlier - i think ive seen a few women have success doing this. 

Let us know how you get on :) x

Feb 2016 - First smear - clear

March 2018 - Started bleeding after intercourse, referred for colposcopy

May 2018 - Colposcopy and punch biopsies  - biopsy clear

30th May 2019 - Smear (still bleeding after intercourse)

15th August 2019 - High grade dyskaryosis

21st August 2019 - colposcopy and LLETZ to remove precancerous cells 

2nd October 2019 - CIN2&3 

February 2020 - Follow up smear

Lotty9000

Hi

Like the others have said, try not to panic. The fact they are happy to wait until mid/late December makes me think it can’t be massively urgent which is a good thing.

I got the results of my smear after 7 weeks and had a colposcopy appointment within 10 days. 

You can always try calling to get an earlier appointment or advise that you are able to attend any short notice cancellation appointments?

Also try stay off google,it’ll send you mad.

xxxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

Usr9113

Hi, 

 

I’ve had a similar result three years ago which gone away by itself and it came back this year. 

So even though you must not panic, I must say following the guidelines you should be offered an appointment to the colposcopy department much quicker. When there was confusion about my treatment under GA this time I said I wouldn’t mind waiting two weeks but they said they wouldn’t and they would fast track me. 

 

https://cks.nice.org.uk/cervical-screening#!scenario:1

 

Even if you choose a wait and see approach. Hope that helps. 

08/2016 - Moderate dyskaryosis biopsy CIN 1 focal CIN 2. 

12/2016 - Improvement

on colposcopy seen.

 

08/2017 - cell reduction seen on colp. Smear nuclear borderline cell changes

08/2018 - clear smear, no visible cell changes.

08/2019 - back to moderate dyskaryosis. 

09/2019- colp showing cell changes inside cervix.

Lletz within same week + elected sterilisation (tubes removed.

 

Awaiting lletz results.   

Shellibell80

Hey. 

I had my smear 3.5 weeks ago. The nurse said they will check for HPV first and if that’s negative then I should have my results in 7-10 days. If it was positive they will send it off for the full smear test. I have had abnormal cells lots of times and a few coloscopies with treatments done. 

My last couple of smears have been fine and I got results inside a week. 

I thought I was pre-menapausal as I have miss 8 periods but this week I came on with abengence. 

Basically im going out of my mind waiting. I see a lot of you have waiting upto 8 weeks so feel a little silly now. 

However after the nurse saying what she did about HPV test results being sooner it has made me worry even more. 

Any advice  I know I shouldn’t worry but knowing I have had pre cancerous cells in the past and I’m in the age bracket for high risk now (40) I’m talking myself into the worse case senario 

Shelley xx

Shellibell80

Got result. High risk HPV boardaline changes to cells. 

Anyone have any advice. 

Colposcopy appointment on its way. 

Thanks 

Shelley xx

oms92

Hi all

just an update: I called the hospital and got an earlier appointment. Had my colposcopy on 19th Sept, they found a polyp which is likely the cause of between period bleeding. She confirmed that I had abnormal cells and she thought they’d need to be removed but she wouldn’t do it there and then even though I asked her to. I could quite clearly see lots of white cells and she agreed that I’d need them removed but wanted to wait for biopsy results. 

 

I callwd to chase results today and they wouldn’t tell me anything other than they’re going to discuss my case at the next MDT which is nearly a month away. Obviously now feeling really anxious and worried and unhappy that I’m having to wait another month to know what’s going on! 

oms92

Ladies waiting for the actual colposcopy - it’s actually fine. Was uncomfortable and unpleasant but nowhere near as bad as I expected so please try not to stress out about it! Try and relax as much as you can and remember how important it is to go. Promise you’ll be fine xxx