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Borderline changes, HPV negative now symptoms

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merrow
Borderline changes, HPV negative now symptoms

Hi everyone, 

I suppose this is a bit of a no-purpose thread as I know everyone is different but I'm wondering if anyone has gone through the similar...

I always went for regular smear tests, all were clear until June 2018 where the lab noticed birderlime changes. They tested the sample for HPV and determined there's no HPV infection so asked me to come back in 3 years. 

At the beginning of this year my periods started getting irregular and sometimes would be preceded by some brown spotting in the 3 days beforehand. Quick research showed it is generally nothing to worry about : I put it down to stress (I'm a mom to a young disabled child) and getting older (37). 

Last Saturday I had some bleeding after sex- it was a week before my period so I assumed that this is it. However, after  day it has finished and now it resembles spotting, showing only occasionally on toilet paper but my period still hasn't started. 

The GP sent me for blood tests and will only do a pelvic exam once the results are in (so mid week next week).

In the meantime I'm getting worried sick, convincing myself the borderline changes have now transformed into advanced cancer...

So, my question is has anyone gone through the similiar? Are borderline changes likely to transform into advanced cancer in just 2 years?  Has any one had similar problems and was asked to do a blood test? Did they provide any answers?

 

With Covid everything is so difficult and slow and I'm really not dealing well with the unknown.

 

Katie148

If you have bleeding between periods or after sex and/or pelvic pain - go to your GP and demand they investigate. They should do cytology slides (checking for abnormal cells) on women with symptoms regardless of the new changes to screening. Go private if they refuse, for peace of mind!x

 

 

Last year, PHE and the government rolled out a huge change to the cervical screening programme. They are now only testing women for cell changes, IF they first test positive for HPV. If HPV negative, women will be sent away for 3 years.

 

Had my test been this year, they would have missed my severe CGIN and stage 1b1 endocervical adenocarcinoma. Under the new guidelines, I would have been sent away for three years.

 

I was 24 and it was my first routine smear test, so it's worrying that other HPV negative women will not be tested for cell changes. I only discovered these changes a few weeks ago, when I was told it would now affect my follow up appointments. We are now campaigning for PHE and the government to consider HPV negative women, that will now not be as lucky as I was.

 

This started off as a petition but as I'm not hopeful of the governent response (if any) - I've decided I'm in this for the long haul, for this issue, under 25s with symptoms being refused early smear tests, and the similar scenarios for breast and bowel cancer screenings. Give me a shout if you want to get involved, need all the help I can get! 

 

The link for the petition is here: https://petition.parliament.uk/petitions/549631

 

Here are some further links if you are interested :

 

Instagram: https://www.instagram.com/whataboutusuk/

 

Twitter: https://twitter.com/whataboutusuk

 

Facebook: https://www.facebook.com/whataboutusuk-108602171005140

 

Gov publication for implementing changes: https://www.gov.uk/government/publications/cervical-screening-primary-hpv-screening-implementation/cervical-screening-implementation-guide-for-primary-hpv-screening

 

Jo's trust information on HPV primary screening: https://www.jostrust.org.uk/information/cervical-screening/primary-hpv-testing

 

Articles:

https://www.thesun.co.uk/fabulous/12694508/woman-diagnosed-cervical-cancer-hpv-clear/

 

https://www.examinerlive.co.uk/news/health/cancer-survivors-fight-change-nhs-19001012

  • Feb 19: First smear test under old screening- HPV negative, severe CGIN
  • March 19: Colposcopy - 2 clear biopsies
  • April 19: LLETZ - found 1b1 tumour
  • June 19: Radical trachelectomy - all clear
  • Aug 20: Discovered follow up tests affected by new screening programme where women will only be tested for abnormal cells if HPV positive - how is this helpful for me?

Katie