2000 - I know that I was exposed to HPV type 45 in 2000. It took over 2 years to get rid of warts and recover from a mental breakdown -who would possibly want a future with me - contaminated etc mindset). Met a lovely chap, married - not had children - super happy with my life. I disclosed my HPV and he has been so supportive since.
2008 - I had a private HPV type test performed at Marie Stopes Clinic in London in 2008 - hence my community name - I have strain 45 (it is unfortunately in top 5 of the strains that can cause cervical cancer).
2021 - No abnormal smear results until 2021 (they introduced the HPV test into the smear program). My LHA refused to fund a yearly smear even with correspondance from Marie Stopes - my GP was supportive.
I had another smear in 2022 - CIN1 and attended a colposcopy - - no biospies taken
2023 - Smear in 2023 - CIN2
2023 -Colposcopy follow up 2023 CIN present visually and several biospies taken. Results - no CIN present
2024 - asked to return in June 2024 for repeat colposcopy - SMEAR and two samples taken. Cell changes were visible on the vaginal wall also (turned white)
Results just received by post, smear detects high risk HPV with severe dyskarysis and the biopsy shows changes consistent with high grade CIN, at least CIN2, no evidence of any malignancy
Invited for LLETZ
Being aware of my exposure, knowing that my immune system has failed to deal with the virus, I've known that this was to be a likely journey I walk but now I face LLETZ, I feel suddenly & surprisingly overwhelmed by it all. I've had 20+ years to get my head around the potential and I thought I had. I'm reassured that I'm in the system and being monitored but the path I have set foot upon feels very frightening- yet it shouldn't as I've always known the potential fuse could be lit at any time.
Is anyone else walked / walking a similar path, perhaps has had LLETZ and is able to provide me with some reassurance that it although uncomfortable (and the immediate aftermath), I will be able to move on and HPV can be removed (what about the evidence on the vaginal wall- how does that get monitored!?)
How many times can LLETZ be performed safely? Repeated surgery just increases scarring and open me for more cervical issues, not just HPV related.
Is it safer to have a hysterectomy sooner but then how and will I be monitored for vaginal / womb & vulva cancers ? This HPV strain is stubborn.
Hi HPV45 and welcome to our group.
I always like to try and say hello to new members but need to start by saying that my experience has been different since I went straight to a cancer diagnosis. I’m hoping other ladies who have been in your situation may come along and post to share their experience.
You’re given a very detailed account of what you’ve been dealing with, so thank you for that. It’s always useful to have as much information as possible to try to help with your questions. You’ve been closely monitored and that stands you in very good stead and shows the value of the screening programme.
I can maybe help with a couple of your questions here. The LLETZ procedure can be performed more than once, but how many times it can be done would be on an individual basis depending on how much of your cervix is removed each time. It cannot be repeated indefinitely.
You mentioned being able to move on after the procedure, and certainly the vast majority of ladies would be able to do just that as the whole purpose of the treatment is to remove the abnormal cells, and then be monitored. However, no matter what treatment you have, neither a LLETZ or a hysterectomy will remove the hpv virus as there is no cure for it.
The hope is that once the abnormal cells are removed, bearing in mind they are not cancer, that your immune system will be able to get on top of the virus and render it dormant and therefore not causing any further issues. A hysterectomy would be considered to be over treatment as an initial step, and the LLETZ would hopefully be enough on its own.
Cervical screening allows your cervix to be checked, but there is no check for potential womb cancer. While your screening is being done, the medic will obviously see your vulval area and vagina, but there is no specific screening for cancers in these areas. It’s very important to report any symptoms in these areas as cervical screening is not a diagnostic test for any cancer, but rather a test for hpv, which would lead to testing of cells if the virus is identified.
I hoped this has helped a little, and please feel free to ask any other questions. Do you know when you’ll have your LLETZ treatment? I hope you’ll let us know how you get on.
Sarah xx
