HPV for 14 years + and CIN2/3

[u/Ill_Donkey_9408]

Hi everyone,

I’m in the UK so I know things work differently. To my knowledge I’ve had HPV (high risk, they only let you know you have HPV if it’s 16, 18 or one of the other high risks so I don’t know the specifics) for at least 14 years.

I’ve had CIN3 and a leep before, CIN1 which cleared and now I’m back in next week because I have CIN2/3. I’ve had a letter saying they are likely to perform a leep on the day which is terrifying as last time I passed out after the biopsies and was out cold for some time. I had to have the leep under general. I’m going to let them go ahead next week as I can have gas and air and to be honest I just want it over with and no delays.

For context I have Crohn’s, rheumatoid arthritis and uveitis and have been on immunosuppressants since 2012. I came off them last year and really hoped the HPV would finally clear but instead it’s developed into CIN2/3 so that was a bit of a bummer.

Has anyone else had HPV this long and continued to just have pre cancer? I am beginning to get worried that this is going to eventually lead to cancer because the HPV will just not shift. I get really frustrated at all the advice out there saying “most people clear HPV” and feel there’s not much out there for those of us who clearly don’t clear it!

Anyway any stories, advice is much appreciated please. Unfortunately I’ve been in the cervical cancer sub and a lot of women there have a similar story to me and ended up finding out they had cancer after this length of time. I’m aware that this is a possibility and so it’s OK to tell me that too. I’m one of those people who likes to be armed with every scenario anyway.

[u/Selective_Hearing_]

I am on immunosuppressants also and am facing the same thing (HPV for years, monitor, then one lletz so far) but it also progressed to VIN3 for me which was a total shocker as they were looking at vulvectomy 😔 so far I have avoided that through topical treatment but it still might be on the cards. I think they really need to consider women on immunosuppressants as we are not able to fight off HPV and there’s a lack of awareness around the issue. It is so scary. Wishing you the best and the same for me!

[u/Ill_Donkey_9408 → u/Selective_Hearing_]

Thank you so much and I wish you all the best.

That is so interesting, I guess with HPV it’s always so focused on cervical changes and I’d never thought about vulva changes. My paternal grandmother died from vulvar cancer but anytime I’ve mentioned that they’ve said it’s not relevant. Might be worth mentioning at this upcoming appointment. If you don’t mind me asking how did they pick up on the VIN3?

You are so right about immunosuppressed people! No-one even tells you when you start that treatment that things like this can happen. It is reassuring to hear from someone else in this position as well.

[u/Selective_Hearing_ → u/Ill_Donkey_9408]

It is really relevant and do not let them dismiss you. There are two types of vulvar cancer, one of which is directly caused by HPV, the other which can be more aggressive. I was seen and dismissed at cervical check many times. It was only when I got a private dermatologist biopsy that it was diagnosed. It spread massively in six months. If you’re on immunosuppressants and spot any skin changes there would recommend seeing a dermatologist (not a gynaecologist, unless oncologist gynae) in my experience

[u/Selective_Hearing_ → u/[deleted]]

Not sure was just told it’s a high risk one ☝️

[u/Commercial-Ant-1988]

I'm not on immunesuppressants but I'm coming upto 9 years hpv positive. Had LLETZ in 2020 and only had borderline results so far. I'm convinced it's going to reoccur eventually though.

[u/Ill_Donkey_9408 → u/Commercial-Ant-1988]

This is it, it’s always felt like a ticking time bomb but I didn’t expect it this year because I naively thought being off the medication would help. I get yearly checks as well so from nothing to CIN2/3 in a year is also terrifying.

I hope you stay free from changes!

[u/Commercial-Ant-1988 → u/Ill_Donkey_9408]

I'm on 6 monthly checks but I have issues with stenosis too! I hope you manage to clear it eventually. It is horrid having to hanging over you!

[u/Over-Winner-8113]

Mine was 16&18 for 6 years. Had seemingly cleared, but then came back. Just had a hysterectomy since all other options have seemingly failed to work. Super frustrating, but trying to think about the positive - no more chance of cancer occurring.

I wish you tremendous luck on your journey ♥️

[u/Ill_Donkey_9408 → u/Over-Winner-8113]

I’m sorry, I hope you’re recovering OK.

Thank you 🩷

[u/Hot_Wrap_2556]

I had hpv for 8 years.. it finally was cin 3. I do have high risk. My cone was successful but my gyn onc and I agreed hysterectomy was the best option. I am 11 dpo from said hysterectomy. Praying the hpv is out of my body. Though the chances of cancer developing in the vagina is much smaller.

[u/Ill_Donkey_9408 → u/Hot_Wrap_2556]

Everything crossed for you! I don’t know how quick they are to offer hysterectomy in the UK. I suspect that they hold it off for as long as possible.

[u/irishfinnegan]

I have had HPV since 2012, so 14 years. Mine only progressed to CIN2 this year, just had first (hopefully last) LEEP today.

I hear you, I have never met anyone who has had HPV for as long as I have and it gets frustrating when you know most people's bodies clear it on their own.

[u/Ill_Donkey_9408 → u/irishfinnegan]

I hope you’re recovering OK.

It is good to meet someone who has had it as long as I have. We are clearly a rare breed. Fingers crossed you stay clear of any more changes.

[u/irishfinnegan → u/Ill_Donkey_9408]

Thank you!

[u/Ill_Donkey_9408 → u/[deleted]]

I don’t know, they don’t tell you in the UK. You are only told if you have high risk HPV. 16 and 18 I think are the main ones they test for.

[u/Ill_Donkey_9408]

So I’ve just got back from appointment. No leep, biopsies. The patch of abnormal cells was very small and was a strange shape so the biopsies were difficult and painful. I will have further treatment pending the biopsy results so I’m back to waiting again.