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Original poster

Colposcopy referral after 3 high risk hpv samples

148 replies

Ilovepugs2017 · 20/02/2023 11:26

Hi,
I’ve just received a letter about my recent smear saying I’ll be referred for a colposcopy procedure.
I have been having yearly smears for the past 3 years due to hpv being found in my sample but no abnormal cells.
Each year it’s shown up as the same thing,
new letter says high risk hpv found in my sample but that cells are normal.
Has anyone had anything similar and what was the outcome? I’m a natural worrier so just looking for some advice from others who have been through similar.

OP posts:
Original poster
Ilovepugs2017 · 30/04/2023 17:30

WolfFoxHare · 30/04/2023 17:10

All the letters I had had ‘This is NOT cancer’ in bold, @Ilovepugs2017 . So I tried really hard to focus on that - they’d caught it in time and could treat it easily.

Yes definitely it’s good that they are able to catch things before they progress further.

OP posts:
WolfFoxHare · 30/04/2023 17:43

@Ilovepugs2017 I don’t really understand what they do and don’t look at these days. I’ve also always had regular smears but four years ago was the first time they found HPV… and I guess they did find some changes when they did the smear three years ago. Do they look for changes if they find HPV? I remember the colposcopy nurse saying she could see two areas she had concerns about (hence two biopsies) but that she thought they were very low grade so I was shocked when they came back as CIN3.

I’m worried that they won’t look for cell changes if they don’t find HPV this time, and it could be missed. I’d go private but from what I understand, even if you go private they only look for HPV… not sure this is true though! It’s a worrying thing but it is so good that the screening service exists.

Original poster
Ilovepugs2017 · 30/04/2023 17:54

WolfFoxHare · 30/04/2023 17:43

@Ilovepugs2017 I don’t really understand what they do and don’t look at these days. I’ve also always had regular smears but four years ago was the first time they found HPV… and I guess they did find some changes when they did the smear three years ago. Do they look for changes if they find HPV? I remember the colposcopy nurse saying she could see two areas she had concerns about (hence two biopsies) but that she thought they were very low grade so I was shocked when they came back as CIN3.

I’m worried that they won’t look for cell changes if they don’t find HPV this time, and it could be missed. I’d go private but from what I understand, even if you go private they only look for HPV… not sure this is true though! It’s a worrying thing but it is so good that the screening service exists.

Yes I think they only look for cell changes now if there is HPV present.
Makes me wonder whether I’ve had HPV for longer though as they didn’t test for it previously.
My nurse didn’t say a lot just said nothing to worry about but just need to take a quick sample. That actually made me think if there was nothing to worry about they wouldn’t need to take a sample in the first place so still quite anxious whilst waiting for my results.

OP posts:
WolfFoxHare · 30/04/2023 18:29

In my experience of cancer investigations, they do hint at what they expect the samples to show, tbh. I had a recent biopsy (not cervical) and the person who took the sample said he thought it looked as normal as he was able to tell without looking at it with a microscope, and I’ve heard that if they think it looks bad, they let you know that too.

JlL2013 · 30/04/2023 19:28

@WolfFoxHare I was told at biopsy it was definitely cancer.

WolfFoxHare · 30/04/2023 19:41

JlL2013 · 30/04/2023 19:28

@WolfFoxHare I was told at biopsy it was definitely cancer.

I’m really sorry to hear about your diagnosis, I hope everything works out well for you. That fits with my and friends’/family’s experience - that they do indicate what they think the results will be, as far as they can tell. Sometimes they do get it a bit (or very) wrong - a friend was told her skin lesion was almost certainly cancerous but it wasn’t, I was told my cervical biopsies looked like CIN1 and they were CIN3. But the nurses and doctors who take these biopsies are experienced and if they say not to worry, they’re almost certainly right (though obviously ‘don’t worry’ is easier said than done!).

JlL2013 · 30/04/2023 21:15

@WolfFoxHare I'm six months post treatment and have the all clear.

The consultant, I guess was 100% sure what he was looking at. He said it's cancer but you will be okay, and to be fair he was right.

qqq82 · 30/04/2023 21:29

@WolfFoxHare I have to agree with you. I know most people find these procedures fine but I really found it very traumatic. I'd honestly rather push out a large baby with no painkillers again .

WolfFoxHare · 30/04/2023 21:40

JlL2013 · 30/04/2023 21:15

@WolfFoxHare I'm six months post treatment and have the all clear.

The consultant, I guess was 100% sure what he was looking at. He said it's cancer but you will be okay, and to be fair he was right.

That’s great news! Congrats.

I guess consultants see so many cases they get a feel for a likely prognosis.

WolfFoxHare · 30/04/2023 21:41

qqq82 · 30/04/2023 21:29

@WolfFoxHare I have to agree with you. I know most people find these procedures fine but I really found it very traumatic. I'd honestly rather push out a large baby with no painkillers again .

I’m really sorry to hear you found it traumatic too. I really have no idea why I felt so upset afterwards given the number of other treatments I’ve had.

GHxx · 30/04/2023 22:40

Ilovepugs2017 · 30/04/2023 16:11

So they have confirmed it is high grade cell changes but not cancer? I know from what I’ve read cervical cancer is one of the slowest to develop. The regular check ups is a positive thing, it’s good that they’re keeping an eye on you until they can treat it x

Show quote history

The result from the smear on her screen before the colposcopy showed high grade, cell changes and hpv positive. She then did the colposcopy but no biopsy and said she could see where the group of cells were but she’d have another look at this appointment. I asked if there was any way of her being able to say it definitely wasn’t cancer yet from just looking and all she said was about how long it takes to develop into cancer so I’m just hoping it hasn’t been like that too long and hasn’t changed by this next one 🤞🏼

Bex4567 · 30/04/2023 23:02

I've had two high grade smears now and both when biopsies had been cin 1 or 2 ..sp don't worry to much it may not be as bad as the smear suggests

GHxx · 01/05/2023 19:30

@Bex4567 oh that’s reassuring! Did you have it treated anyway? I just assumed high grade from the smear result would mean the worst one

Bex4567 · 01/05/2023 20:31

Sometimes it can ..but both mine were high grade moderate and severe and one ewas cin 1 ,and the other cin1 and 2

bobisbored · 08/05/2023 21:15

@GHxx sorry I've only just seen your comment. It was ok, no more painful than a smear but lasted longer. The nurse asked me to cough as she did the biopsy which I thought was odd but I've since read it's so that it doesn't hurt as much! I had a bit of cramping afterwards but it really wasn't too bad. Good luck x

fluffylampbear · 08/05/2023 21:52

hi all, can anyone confirm whether a smear generally checks for HPV or just for dyskariosis / cell changes?

To clarify I just had my smear test to follow up about six months after LLETZ a few months ago (had the LLETZ due to grade 2 changes and HPV 6 months ago). The letter said my recent smear / check up was HPV clear but does that mean there are just no cell changes or, quite differently, that the virus is not showing (maybe cleared!)? A bit confused as to what they test for at this point! Could I have cleared the virus or are they just checking for abnormal cells again???

Thank you!

Bex4567 · 08/05/2023 22:05

I woukd like to think they would check for hpv and the cells due to the history of letz ..but I'm not sure as its just a smear..maybe call the gp and ask...thats what concerned me that if your hpv negative and had abnormal cells 6 months previously they assume that just checking for hpv is fine when really it isn't

GHxx · 08/05/2023 22:21

@fluffylampbear im in Scotland so I don’t know if it depends where you are but I think they used to just tell you if there were changes but now it’s done in two stages here, you go for the smear and they should get the result to you within 4 weeks if it comes back negative for hpv, if you test positive for hpv you know because it takes over 4 weeks, your smear is sent on for testing for changes at that point. So I knew mine wasn’t great news when it had taken 9 weeks to come back

GHxx · 08/05/2023 22:23

@bobisbored okay that helps thanks, I don’t even know if I’m getting a biopsy this time but I’ll either need it at this one or the one after baby arrives I think

fluffylampbear · 08/05/2023 22:38

@ghxx that sounds about right TBH. they told me that results would take 9 weeks, they were back in about 4 and said "no HPV present" so maybe that would indicate I have cleared the virus? Hopefully!

I will check though.

FWIW I have gone through this before and had the same "negative" result only for it to return at the next smear a year or two later. so it could just be dormant I guess.

I have been taking the AHCC (someone suggested upthread) and Beta glucans so I am so hopeful that it has actually cleared it. I will keep taking it until I know it's all gone!!

GHxx · 08/05/2023 22:48

@fluffylampbear oh I will need to look into taking that if it’s something you can take while pregnant. I don’t fully understand the whole hpv thing as to whether you can properly get rid of it or if it can lie dormant for a while. In my case I believe I’ve had it a while but it never showed up in previous smears as the result was only showing no changes (not no hpv - don’t think they used to check for it too). I had a problem with not being able to get rid of verrucas at one point and this seems to be linked to having hpv and your body not being able to clear it. I’ve had a really stressful year or 6 months so it wasn’t a huge surprise that my smear in December was showing hpv and changes. There’s a lot on YouTube about the impact of stress on it and how your body can’t clear it when you’re going through a stressful period so that was definitely my issue

Original poster
Ilovepugs2017 · 06/06/2023 12:46

Update on my biopsy results

Colposcopy referral after 3 high risk hpv samples
OP posts:
solice84 · 06/06/2023 14:20

@Ilovepugs2017 I'm waiting on mine
Hoping I get the same

OneHitWonder40 · 06/06/2023 17:51

@Ilovepugs2017 thats fantastic news that it’s nothing more. Must be a load of your mind?

I can’t believe they leave you for 3yrs before another smear when you’re HPV+. In England we have ours annually if HPV is present.

Original poster
Ilovepugs2017 · 06/06/2023 18:03

OneHitWonder40 · 06/06/2023 17:51

@Ilovepugs2017 thats fantastic news that it’s nothing more. Must be a load of your mind?

I can’t believe they leave you for 3yrs before another smear when you’re HPV+. In England we have ours annually if HPV is present.

Yeah it is a relief though a bit worrying about the 3 year wait especially since my last 3 samples have been HPV positive

OP posts: