Can smear results be constantly wrong?!?

Hi all,
Wondering if anyone else has had a similar situation.

3 years ago i had my first smear and the results came back as HPV positive with low-grade abnormal cell changes and i was reffered for a colposcopy.
At the colposcopy the nurse told me i looked perfectly healthy and couldnt see any abnormalities. So i was discharged and told to just go for my next routine smear in 3 years.

3 years on ive had my 2nd smear and the results came back HPV positive with high-grade severe cell changes. I immediately recieved a colposcopy appointment where they said id need a LETTZ procedure.
So ive spent the past 2 weeks panicking, researching and psyching myself up for this procedure. Arrived at the hospital today prepared, just to be told during the colposcopy that yet again everything looks completely fine ?!

Im obviously relieved i didnt have to have the LETTZ, but equally very worried theyre missing something. Seems odd ive had 2 smears in a row getting progressively worse results but they seem to think my cervix looks healthtly.

Apparently theyre going to get a 2nd opinion on my smear but likely theyll just get me to have another one in 6 months to see if its changed.

2 false results seem unlikely to me and im getting concerned theyre missing something and keep leaving it to get worse?

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Hi so sorry you’re going through this. Have they told you exactly what abnormal cells were on the smears as there are different types. I only learnt this, this year, after my dr did the same thing and has been under an incident investigation for not following government guidelines. My case was found at the hospital failsafe checks when they realised I shouldn’t have been sent back to 3 year smears.

I don’t want to worry you as I’ve had lots of test this year an ultrasound, 2 colposcopy’s and 2 lletz which haven’t returned anything much than hpv changes (not cgin/cin) I’m currently awaiting 2nd lletz results. So I might still not have much going on but they’re being extra careful. I had endocervical glandular neoplasia which is found inside the cervix hole rather than the surface part so hard to find. I’ll copy and paste the government guidelines I found when I get back from school run.
X

If I was you I’d start by contacting your gp or colposcopy clinic, asking which hpv type you have (I have high risk hpv 16 this can sometimes change how they deal with you if minor cell change) and what exact abnormal cells were present. Then double check what they’ve done and if it follows the guidelines. If you don’t get anywhere, find it’s wrong or are still unhappy call PALS the hospital complaints department and explain. You will soon be allocated a nurse that has to follow it up for you. You could also request your health records this can take around a month (make sure you look for an email headed accesstodate as I missed this and it only stays active for 2 weeks!). I’ve found my drs letters to my gp and some results on my nhs app and a hospital patient portal (if you google your hospital and search the site you should find one)

There’s quite a few different reads on the government guidelines if you google cervical screening government guidelines you can get into a right rabbit warren of stuff as there’s lots of different headings on the site that take you to sun categories and beyond lol.

I found this flow chart which I think by what you’ve said could possibly mean your case should be discussed at mdt meeting (where different drs get together and discuss what to do)
https://www.gov.uk/government/publications/cervical-screening-care-pathway/cervical-screening-care-pathway

There’s also this booklet I’d not found before searching again now so I’ll be having a read haha
https://assets.publishing.service.gov.uk/media/5a74a704ed915d0e8bf1a0b6/nhscsp01.pdf

I think this was what I’d seen that would have helped me if I’d have known what cells I had last year when they discharged me. It’s more to do with colposcopy biopsy’s but has bits dotted in about if it’s certain cells not to discharge to 3 year recall etc. https://www.gov.uk/government/publications/cervical-screening-programme-and-colposcopy-management/3-colposcopic-diagnosis-treatment-and-follow-up

Hope you manage to get some answers let us know how you get on x

Hi Hanandlee!

Thanks so much for all this really helpful info, i really appreciate it! Amd im so sorry that you had to go through all this and didnt get the care you were entitled to. Its crazy to me that these thinfs can be missed or pushed aside.

Having read up a lot on CGIN and glamdular cell changes in the cerbix canal as opposed to the surface - this definitely feels like a possibility as its harder to see / pick up in colposcopy. Having said that i have no idea what type of cell changes i have (just says cells on the letter i received), and i would surely assume that if it was CGIN then they wouldve continued with the LETTZ?
I asked what type of HPV i have and was told that they no longer test for which type you have as they are instructed to follow the exact same procedure no matter what type you have (this is a new guideline over the past 5 years). And if i really wanted to know id have to go private.

I also questioned not being seen for 3 years and they reassured me that protocol is if the nurse is happy they cant see any abnormalities at colposcopy then they are allowed to discharge back to 3 years?
I think as this has happened twice now thats why my case is being taken to a MDT meeting. But as yoi can imagine , very concerned itll be dismissed again.

Im due to hear back in 2 weeks whether they want to go ahead with the lettz or not so ill let you know. Id deffo be interested to know what type of cell chamges i had though so i’ll try to find that out xx

Hi
Hmm see what they say you should defo be given the answer of what type of abnormal cells they found if you ask. Make sure you voice your concerns to them.

My case started last year 2022 smear I was just sent a letter saying high risk hpv positive with abnormal cell change arrange a colposcopy then booked in. At this colposcopy the dr said my cervix was fine couldn’t see anything and then did an endometrial womb punch biopsy (which guidelines state isn’t reliable and shouldn’t be done) I was told nothing else apart from cervix looks fine, biopsy came back as nothing and discharged to three year recall. (My case shouldn’t have been sent to three years and wasn’t sent to mdt)

This year a dr rang me out of the blue and I’ve managed to find a lot more out from the different ways I shared above. The letter the dr sent to my gp in 2022 about my colposcopy told them I had hpv 16 and which abnormal cells I had.

Good luck in finding out things hope they figure it out. X

Hi, not exactly the same but I had to have a colposcopy having the same results as you where I too was told all was fine and then went onto have yearly smears. I had a follow up smear where I was told I still had HPV but the smear was fine. A month later I now realise I started getting CC symptoms which took almost a year for me to be referred (and by me having to really push for a referral) to have an MRI scan where they confirmed I had cervical cancer. Have you had any symptoms at all? I really wish I’d kept a closer eye on all this but assumed (and thought) I was in safe hands with the professionals but I know things were missed. I hope you get some answers soon as I now wouldn’t 100% trust the results.

Im so sorry to hear this. Did you just keep calling and insisting they did further checks?
I think theyre reluctant to do anything more with me because of my age.
Did they explain to you how or why the cancer was missed? Why wasnt it showing up on smears / colposcopy?
I think at this rate i want to at least insist on a biopsy / lettz because im definitely paranoid something like this might happen. Xx

Unfortunately I didn’t really put 2 and 2 together but started to get lower back pain that wouldn’t go away and put it down to perhaps spine degeneration as I did a lot of running and due to my age so spent a lot of wasted money on chiropractors and physios but of course didn’t solve anything. Towards the end of last year I had extreme pain and bleeding (again due to my age I hadn’t had a period in 6 months) and just knew something wasn’t right as I’d never had heavy bleeding before and was actually housebound for most of the month as I was bleeding so heavily. I kept saying to my husband that I just didn’t feel right and made numerous trips to the GP (I rarely visit the GP) who kept insisting that it was due to my age and menopause symptoms. Having seen pretty much every GP in the practice I just pushed for further investigations (unfortunately my grandmother passed away from cervical cancer which is why I’ve always kept up to date with smears etc) and just wanted to rule this out. I didn’t think in a million years it would be CC particularly as I’d been so fobbed off but it was. I don’t want to cause you any anxiety but I wish I’d known then what I know now and would have pushed much earlier on if I’d realised.

Hi I’m very sorry to hear what you ladies are going through right now .
I would definitely take it further and insist something is done whether a leetz or a biopsy or even both .
Since the rule changes I think it’s disgusting as not all HPV is picked up as some cancers are not detected through HPV .
I had a smear myself a few months ago now . Which the nurse had seen nabothian cysts about 4-5 of them and one of which is pretty big . And a few darkened patches ( which been told pigmentation patches ) by doctor as had a docs appointment the very next day which the nurse had booked me in for for next day .
My smear ( HPV test ) came back the very next day even though it was taken at 5.15 well 530 pm by time I had it done and my doctors response to that was oh I must admit that was done quick but it’s come back negative and that it’s all ok . She said also it’s just a test for HPV that does it so quick now but waiting for results to door can take 3 weeks or more . I got my letter 2-3 weeks after but had my result from doctor and the app on my phone . I had only just downloaded the app it’s really good as you can see some medical notes .
Anyhow as my doctor saw me that day as nurse had arranged my appointment . Doctor said not sure what the dark patches are (I think I have 4 ) and she called them lesions or patches darkened areas / pigmentation .
And she said about the cysts maybe nobothian ones . I think they ruled that out .
But not the pigmentation areas .
My doctor referred me to the hospital for a cocoscopy sorry I don’t know how to spell it . Anyhow 2 weeks go past and my doctor wrote another letter in to the hospital and with that she had a response by saying because my smear was normal they not going to see me till another 8 weeks or so .
I had a text off my doctor one evening .
I couldn’t believe it . Nurse found a few things on my cervix referred me to docs for next day
Then I get told I have to wait just because HPV isn’t present . But they prob know / think they know the cysts are nobothian but which isn’t a problem I’m not at all worried about that part but it’s the not knowing of what these pigmentation areas are .
It’s all very sad within the nhs with women having to suffer due to oh it’s HPV neg this woman can wait type thing .
Anyhow I wrote an email to the hospital and my case was flagged .
And I’m getting seen but not yet . But I will be having a coloscopy straight away .
I hope you all get sorted out and thinking of you all .
My history
2008 Mild Dkleoros 6 months later in 2009 turned into CIN1 6 months after turned to CIN2. Had the coloscopy / biopsy had the leetz ( large loop ) in Jan 2010
Was on 6 month check again twice . Then went over to yearly smears from 2010-2020
I had my gyne letter for proof .
My letter wasn’t worth anything before 2020 as rule changes didn’t allow me to have my smears every year till 2020 .
Anyhow I had a smear in June 2020 and was told I had a big erosion ( still have it )
As May have that treated on .
But back then I had to have a doctor in then to see what everything was . And I think she said I can see scarring ( so maybe that’s the pigmentation patches . I feel something was missed with me back then due to having a doctor in to check .
Girls always trust your gut if you feel something isn’t right or doesn’t sit well with what your gut is saying
Demand more .

Hi ladies, thought id update that after the MDT meeting theyve decided to go ahead with the LETTZ which honestly im super relieved about after hearing your stories. At least this way i dont have to worry about any ‘what if’s’ for the next 6 months , and hopefully the biopsies will give us some definitive results.
Glad i dont have to insist on treatment and theyvd agreed to it themselves. A step in the right direction . X

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Hello. Just seen this thread and wanted to wish you all the best and let you know that you can buy a superdrug test online which will tell you the strain of hpv you have. I know they treat them all the same but I always like all the information I can find xx

If you are in the U.K. and it is a high risk one, if you request your medical records from the hospital it should tell you what strain it is (I don’t have experience with if it would say for low risk strains) I requested mine and on my smear results it stated it at the bottom of the report x

Hi Ladies,
I was told by the Colposcopy nurse that they no longer test for a certain strain of HPV , you either have it in some form or you dont, and youre treated the same regardless. (So it wont even be on a medical record as of 2023).
And apparently if i really wanted to know id have to pay private, or as you say Katie get one from Superdrug.
Does seen crazy to me that id have to pay £50 to find out whats going on in my body?! They obviously dont deem it super important these days and take precautions no matter the strain, which i guess is a good thing.

Oh no I wasn’t aware they had stopped this year, I’ve found a nhs training document might well be outdated

http://www.cytology-training.co.uk/wp-content/uploads/2016/10/Primary-HPV-Screening-Information-for-Sample-Takers.pdf

Which says “Some laboratories use HPV genotyping for HR- HPV types 16 and 18 to help manage women with persistent HPV infection and normal cytology”

So I guess the nhs would only make notes if it was 16 or 18 anyway. I found out I have hpv 16 on my medical records of my smear from last year 2022, it was only noted as hr hpv on this years 2023 smear though and had a different form format/layout so not sure if this is due to the change you have mention or due to the fact the hospital took this smear and not gp as previous one was. Might still be worth checking medical records if your smear was high risk hpv positive pior to this year tho. It’s free and your legal right to get these if you want them and you go through a separate hospital department not gp or colposcopy to retrieve them x