Type 58 high risk detected abroad and UK not interested

Hello,

I have been browsing for a while and I thought I’d ask your advice.

I was first diagnosed with igh risk HPV in England in January 2019. No cervical changes.

Jan 2020 HPV still present, no cervical changes.

August 2020 I had colposcopy in Greece and I saw it CIN1 with my own eyes. Biopsy confirmed this. We said we will watch and wait. They did not remove it. I was told to try Silofgyn ointment for 6 months. It hardly works for older women (I’m 45) but worth a try.

January 2021 in the UK, smear teet came back clear.

August 2021 in Greece colposcopy showed SIL1 but reduced, smaller area affected. I had smear test and DNA which came back with CIN1 and HPV type 58!!! High risk type but very popular only in Easter Asia, very rare in the rest of the world. How I got it, no idea.

I updated my GP so that they put me back on the annual smear test program and that’s where i got stuck. The problem is that in the UK the nurse told me, they don’t test for this type 58 because it’s rare outside of East Asia and she does not know if they’ll look into this. She has contacted the senior cytologist to see what they’ll do with me but doubts they’ll look into it. I told her that I already have CIN1 and whether they’ll ignore it and let it progress and let me die and said there’s not much she can do!! She also asked me why I went you Greece to get a private test done!!! Well, for the exact reason the NHS failed me. I love life! The fact is that yeah, they don’t test for it but now I know I have it and it’s progressing we need to save me from getting any sinister results!

I’m speechless, shocked and very very upset. Do you ladies have any advice experience or tips regarding my situation? I’m in tears.

Thank you in advance.

Hello. Wow that is a difficult situation. Can you maybe get a private to see if the CIN 1 has progress? If it has not great news. If it has could you get the results to GP and move from there?

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Hi edelweiss

I’m not sure how useful it will be for you but just to let you know I noticed Superdrug supplies a home sampling kit which tests for a range of HPV strains including type 58. i suspect that if your results were HPV positive then you wouldn’t necessarily know which strains you had with the exception of types 16 and 18:

https://onlinedoctor.superdrug.com/hpv-test.html?gclid=CjwKCAjw2P-KBhByEiwADBYWCv6XksLpGkvZp8X_JZonVhzJwB5u7LQj8cR9cZatApDGmQdX1X8laRoCCNsQAvD_BwE&gclsrc=aw.ds&fbclid=IwAR3huiah4_VX5x618y2meUDW1JaDdkg-VgOZuMk5B68nb0bhwVXnAONsLA8

There are several suppliers of HPV self sampling kits which can be found by googling on ‘hpv self testing uk’; some of them provide contact details so you could ask directly if they can offer you any help regarding HPV type 58.

x

2 Likes

Thank you, that is a great idea, I’m going yo look into it :slight_smile:

Thank you. I went private in Greece which is cheaper but still expensive. My gynaecologist is a surgeon too and it was all very well done and did official translations for my GP. I think if nothing happens here I’ll have to wait till next summer and get tested annually in Greece. It’s extremely disappointing and worrying to tell them that I have high risk type 58 HPV, I have CIN1 and see them doing nothing. Shocking.

Yes if you can do it again in Greece much better. with CIN 1 you have a good chance of getting rid of it by itself with no treatment good luck

Hello, yes you’re tight, it only says positive or negative. It doesn’t really you which type. Would the gp do anything about it? Who knows. They refuse to do anything for the tests done by consultant surgeons abroad but they’d go by the test done by myself at home. I font know what to think anymore.

Hi edelweiss

If it were me I would try a home sampling test and if the result was positive then see what the GP says - you don’t know until you try. Bear in mind It’s very possible you could test negative for HPV because the chances are your immune system could naturally clear your HPV.

If your HPV persists and after pulling out all the stops regarding NHS support you don’t get any joy then, apart from going to Greece, I can only suggest going private in the UK - if affordable?

I’ve had a few health situations in my life (I’m in my mid 60s) where I felt I was only going get the help I wanted by going private - it can all be quite a conundrum.

Best wishes
x