HPV Positive and unable to see Transmission Zone

Hi There,

Posting in the hope that someone else has been in my shoes or can shed some light! To provide some background on my dilemma, I'm a 60 year old woman and have had 'abnormal' smears for the past 3 years, all being HPV positive in the high risk category. In terms of my smear results, the first showed Borderline cell changes, the second mild dyskaryosis and my most recent smear no abnormal cells were found. I had a cone biopsy many years ago in my early 20's, where they removed high risk cells of grade CIN 2. I since then have returned completely normal smears, until September 2024 when the abnormal and HPV results were found.  I can't recall my results from many years ago, as they are not available on the NHS App - but from my memory, I think I did test positive for HPV at that time. Because of the recent abnormal smears, I've had to have 3 colposcopies carried out, all looking normal on inspection, but they were unable to see the transformation zone, due to my cervix being 'retracted' and I believe I have stenosis. They recommended that I have a LLTEZ procedure carried out either under local or general, which I then had 'attempted' last year - September 2025 under General. They were unable to complete this due to insufficient access to the part of my cervix that was of concern and there being insufficient cervical tissue remaining following my cone biopsy back in 1987, or thereabouts.  As a result, they said that I could be monitored with regular smears and colposcopy for the foreseeable future to see if things settle down. It was great to get the normal result this year, but the consultant pointed out to me yesterday when I visited for my colposcopy that they were unable to provide reassurance that there was nothing going on 'further inside' and that the only way to remove any uncertainty would be to carry out a hysterectomy. Of course, this comes with it's own risks and he explained that it was an entirely personal decision. I either live with the fact that there is some risk involved in them not being able to see the full picture, or draw a line under things and opt for this course of action. I did discuss this was my surgeon last year after the op, and she agreed that it was reasonable to delay the decision until I was absolutely sure that it was the right course or action - and in view, necessary. Of course the consultant yesterday did emphasise that there was a very strong likelihood that things would be fine - and on removal of my womb and the surrounding area, it was a strong possibility that nothing would be found. But of course, they can't give me that one hundred guarantee. 

My question and dilemma is this! Has anyone been in this position and decided to wait it out, as I'm currently doing? My current plan is to visit again in a year, see if the HPV has settled down and then make a decision. I would be very interested in any thoughts/advice or first hand experience anyone may be able to kindly share with me. I'm naturally worrying a little, but also mindful that there may be nothing of concern to warrant a big operation. I'm also wondering/researching if there are any half way houses whereby they can look into 'difficult to see' areas using specialist means?  Again - any thoughts would be very much appreciated. This is my first post!  Thanks in advance. 

Parents
  • Hello and thank you for posting.

    I am sorry that you find yourself in this situation, but as nurses we are are unable to give a medical opinion and would always suggest further discussion with your hospital team

    I understand you wanting to hear of others experiences. For this I would suggest posting in one of the other categories on the forum such as 'introduce yourself' or 'pre diagnosis, signs and symptoms'

    As well as our Cancer Chat forum, there is a cervical cancer thread on Macmillan.

    I hope you get the information you need to help you with your decision making. Unfortunately only you can make this decision, but I appreciate you wanting as much information as possible to help you make an informed choice that's right for you.

    Do ask your team if they have a gynaecology cancer nurse specialist you could speak to, or whether they have other patients who have been in a similar situation that you could connect with.

    I have also found some information on the NHS about things to consider when having a hysterectomy and having a hysterectomy for cervical abnormalities on the Health Experience Insights website.

    Take care and I hope you get the help and support you need to make your decision. If you want to talk things through then do call 0808 800 4040, lines are open Mon-Fri, 9-5.

    Sarah.

Reply
  • Hello and thank you for posting.

    I am sorry that you find yourself in this situation, but as nurses we are are unable to give a medical opinion and would always suggest further discussion with your hospital team

    I understand you wanting to hear of others experiences. For this I would suggest posting in one of the other categories on the forum such as 'introduce yourself' or 'pre diagnosis, signs and symptoms'

    As well as our Cancer Chat forum, there is a cervical cancer thread on Macmillan.

    I hope you get the information you need to help you with your decision making. Unfortunately only you can make this decision, but I appreciate you wanting as much information as possible to help you make an informed choice that's right for you.

    Do ask your team if they have a gynaecology cancer nurse specialist you could speak to, or whether they have other patients who have been in a similar situation that you could connect with.

    I have also found some information on the NHS about things to consider when having a hysterectomy and having a hysterectomy for cervical abnormalities on the Health Experience Insights website.

    Take care and I hope you get the help and support you need to make your decision. If you want to talk things through then do call 0808 800 4040, lines are open Mon-Fri, 9-5.

    Sarah.

Children
No Data