End of November my hpv test came back positive. Turns out i have HRHPV18. I’ve been with my husband for 8 years and believe neither of us cheated as he was vaccinated against hpv before we met and the drs have told me its possible it had been dormant in my system since before we were together. (I have had previous clear pap smears, though i was a few years late to my last one, and the one i just had was 1 year over due)
It took 4 days from the day i took the test days til my appointment at the hospital for a colposcopy and biopsy. She found a some slight cell changes and took the biopsy - I got a notification 2 weeks later saying the biopsy was within normal limits. I was relieved.
Fast forward to 22nd Dec i get a call from the specialist. ‘I am so sorry but we need to repeat the proceedure… your biopsy does not match the pap smear. We have a clear biopsy but your smear detected HSIL. Someone will contact you soon to book you in for a colposcopy and vaginoscopy to look further to find the source’. This raises so many questions… like why the hell to they only look at the front of the cervix in the first place, what is HSIL (CIN2/3 as written in the lab notes) and what if they cant find it… oh and WHY TELL ME BEFORE CHRISTMAS
After weeks on edge waiting for a call I finally got a call this afternoon to book me in with a different Dr first thing tomorrow morning (since the specialist i saw had no available bookings). I am nervous as hell… i hate showing my lady bits plus dislike people, awkward situations and topics and my anxiety sky rockets. -On another note, god i hope its a woman.
So, now I’m sitting here stressing trying to find answers to the ‘what if they dont find it’ question… hoping someone out there can shed some light… is it possible the pap was wrong??
6 weeks ago I got my first bad Pap C1N1. My biopsy results showed no dysplasia, no C1N1. Both were 6 weeks apart. I am taking supplements (just posted all about it). Only recommended to get another PAP in 4 months as course of action from pathologist while GYNO said can wait a year. Colposcopies are better and trump PAPs.
I would get another PAP and if turns out bad again, another colposcopy then go from there. Too young to be tugging away at your cervix unless absolutely needed.
A second opinion on your own (another doctor) would be in order if this panics you.
Hi @NoOne
I had a similar random phone call last year too, you can read my story and updates if you search “ Misdiagnosis investigation”. So I feel your pain, you go from getting over the first shockwave to what the hell is going on again, I hope you’re coping ok and have someone to talk too. Please find some comfort in knowing that they are rechecking you just to make sure and they are probably just doing what they should have done before and rechecking just to be on the safe side.
All smears go through a fail safe check to make sure nothing is missed which is how they probably picked up on your discrepancy. If you are in the uk there are government guidelines/ protocols that should be followed depending on your smear results and biopsy out comes and if these didn’t happen that’s when it’s flagged up. (If you search gov smear results or gov colposcopy type words they’ll come up but they’re quite a few different ones. They also group smear findings under one term too, on my smear result letter 2022 I was told just abnormal cells, then last year they finally explained to me that my abnormal cells found on the smear were endocervical glandular neoplasia. When I researched into how the lab reports these (again a rabbit hole of searching on the gov) this heading can mean a few things including cgin or even adenocarcinoma cancer. I know your result is different but might be worth checking.
If you have access to you health records like on the nhs app or request them from the hospital, with your abnormal smear result there should be a snomed code this is a number that the lab people use to describe what cell change they saw. I asked the nurse at my recent hospital test of cure smear about these snomed codes as mine was the code for adenocarcinoma! (I’ve had nothing found cell change wise on twox lletz biopsy’s just hrhpv16) she said she had a book with them listed some where but it was more for the lab to use?!? This might be why it’s been missed if your dr read your records wrong and didn’t look in the right area.
I would certainly be asking questions like…
what happened to make my smear result be rechecked?
Were government guidelines followed at that colposcopy?
Was my case discussed at an mdt meeting due to my biopsy results being different to my smear? (Mdt meeting is a meeting held by a few different people like lab technicians and drs so they can discuss cases) I’m sure it’s in the gov guidelines that if a results is completely different with higher grades it must be discussed. If you arnt happy make a complaint to PALS.
Please try not worry to much I know that’s easier said than done. I’m still living with the what ifs, I had two rounds of lletz last year as I was so scared and confused as to why my smear would say one thing but both biopsy’s found nothing just hpv16. I even pushed for an ultra sound that showed nothing. My test of cure smear results (they took two swab one a brush that goes right inside the cervix and normal one) have just this week come through on my nhs app and it’s clear! I’ve had a horrible cold at the time they took them so thought my immune system will be low it’s sure to be there but nope not even hpv there anymore so confusing but I’m trying to get on with my life now. I can’t answer the can smears be wrong question but I know or hope mine was?! I still think of having a private mri to rule anything out completely but would have to go private.
My advice if you are not happy with what the drs are saying is to access your health records and try and research what ever you find out through proper government sites. Make sure you write down your questions and if they fob you off or can’t answer them go to PALS with your concerns they will have the head nurse take charge of your complaint and make sure your questions are answered within a timescale. Good luck for tomorrow I hope you get good results and they are just checking up on you to be on the safe side. Xx
Update. They found nothing on the second colposcopy and said my case would go to a multidisciplinary meeting. The drs there decided that instead of continuing to search for the cause of the cells that i should just be booked in for a LLETZ proceedure. Now im just waiting on the hospital to contact me with an appointment.
LLETZ proceedure completed. She said everything looked normal. Which doesnt give me much hope. 2 weeks to get results. She said either and upgraded or downgraded diagnosis (unlikely to be downgraded as my cytology has already been re-reviewed) and if she didnt get anything my case will go back to another mdm meeting for them to decide what to do with me. When she calls with my results im going to ask if we can just skip forward to a hysterectomy. I already have 2 kids…
Hi noone
Hope you’re feeling okay after ur LLETZ and not too stressed with the waiting
It does sound like you have a strange case with the fact they can’t find anything. Hopefully they will find nothing when they review your LLETZ sample x
I think at this stage the drs are actually hoping to find something in the tissue they cut out… just because of the cytology results being bad there is definitely something they just have to find it.
Its been three months since my swab… seeing posts like cin1 to cancer in 6 months etc are making me quite nervous now. Every notification makes my heart jump now waiting on the results to get updated to my health records app.
Sorry to hear ur so nervous
How old are you? Maybe that will make it more likely to have them agree to hysterectomy if you are a bit older and have completed your family? Can understand why the posts are upsetting you. It seems in most cases CIN doesn’t behave like that and they are isolated cases
People who come up negative or have better results often don’t post like people are more likely to leave a bad review for a place. People forget about the good news x
Hi, Just wondered if you’d had any results back yet?
I’m in a slight similar situation in terms of conflicting results. I had a smear in august last year which was HPV+ and low grade changes, referred to colposcopy which i attended and the doc said she couldn’t see anything abnormal and to return in 6months for a follow up to check.
Returned this Feb for smear & colposcopy during which she again said she couldn’t see any area of abnormalities and just wait for smear results. Just had my smear results and again have come back as HPV+ with low grade changes. I’m so confused as to how this result is different from the colposcopy which was done immediately after. I’m now obviously so worried about where the changed cells are? was something missed during the colposcopy, could the cells be higher up and not visible during the colposcopy? What test is more accurate? What happens again if nothing is seen on the colposcopy?
I’ve always been under the impression that the colposcopy was a much more accurate result as essentially a smear is just a sample whereas the colposcopy is a whole view of the cervix but now i’ve seen a few posts regarding smear results differing from colposcopy’s or biopsys so now i’m so panicked that something is seriously wrong and that it’s been missed. I’d felt so positive leaving my colposcopy that the smear would have been okay but now i’m back into worry mood again.
Ive had the results come back from the lab, they didnt get a damn thing from the lletz proceedure. Im honestly wondering if they mixed up my smear with someone else. Cin2-3 should be super visible. But yes to answer your question dr has told me it could be further up. Im waiting for her to call me with my results to tell me whats going to happen next.
oh gosh i’m so sorry that the results again have come back conflicting. It’s such an anxious time, and the waiting for results is just dreadful. Yeah i was under the impression that even low grade changes CIN1 should be visible so CIN2/3 should definitely be picked up.
Do keep this thread updated once you’ve spoken to the Doctor and what your next steps will be. I’m currently waiting for the doctor to call as i’ve seen my results on the app aswell so haven’t had them explained by a doc so i do wonder whether she will suggest that mine are higher up too possibly.
I suppose your not wrong about posting positive outcomes… if i have one il have to remember to do that. Im 34 2 kids and i done having kids so a hysterectomy isnt a tough decision in that regard
I’m in a similar situation. CIN2 found during smear test but then the colposcopist couldn’t see any abnormalities, he thought the smear results had come back wrong. After taking a biopsy, they have found CIN3. Trying to find a straight answer on what this means after the loop therapy but find myself opening a larger can of worms each time! I’ll keep everything crossed that your results come back positive, please keep us updated x
They found nothing… my case will go back to the mdm to decide whats next.
On another note - day two of first period since the proceedure. Just fucking kill me. 4.30 am waking up in agony. Pain killers take an hour to kick in mean while it feels like fucking labour but without the joyous breaks inbetween contractions.
Oh jeez, you’re having a hard time! I’m going through similar issues myself.
I had smear with colposcopy smear came back server and hpv pos yet colposcopy & punch biopsy came back all clear. They are discussing it at the next meeting in 4 weeks time. I just think there’s no way there was no cin I seen my whole cervix light up white when they put the dye on. Currently in a lot of pain & suffering from a number of symptoms.
I have had 3 years of high hpv smears but never any cell changes. Last smear was 28Feb24.
I routinely was sent for a colposcopy
( 2ndApril24)
When there, the lady said she needs to take a biopsy as she can see CIN3 cells.
Never had cell changes on my smears. So im a mess atm, its been 18days since the biopsy, still waiting on results. But now i feel like i could never believe/trust a smear test again now. So i definitely believe that smear tests can be wrong.
It’s so frustrating that there isn’t a page on the NHS website that explains how patients can interpret their smear results. I find it helpful to have information and to understand the medical jargon and abbreviations, but the medical profession seems to want to keep that information to themselves. WTF – it’s my body! Of course patients get anxious about tests and results, but we should be given the option to have the detail explained to us. For me that would help reduce my anxiety not increase it.
I asked ChatGPT (warning: ChatGPT can make mistakes) about the conclusions of clinical trials on the accuracy of smear/pap tests. Accuracy “is reported to be about 30% to 87%. Specificity – the ability to correctly identify those who do not have the disease – it’s typically high, usually above 90%. The wide range in sensitivity can be attributed to various factors including the quality of the smear technique, the adequacy of the specimen, and the skill of the cytologist interpreting the results… pap tests have a notable rate of false negatives (failing to detect normalities when they are present) and false positives (indicating an abnormality when none is present). False negative rates can be around 5% to 20% largely due to sampling errors or interpretation errors.”
Another forum user posted a link to a clinical trial showing that the was a significant difference between the results of biopsies taken at a colposcopy and the analysis after a leep/lletz treatment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8848493/
So many forum posts seem to be about the confusion and anxiety when test results change abruptly over a short period of time or different tests report different findings. Patients want to be able to rely on test results but research studies like those above indicate that errors are not unusual. It would be good if testing errors could be acknowledged as a possibility and if we could be retested when there are conflicting/confusing results, especially as over-treatment and under-treatment can have serious consequences and further testing could help to ensure appropriate treatment.
Here’s a link to the UK government smear test codes in case it helps anyone else. You need to have asked your GP for full access to your medical records in order to see your detailed lab reports.
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1022218/Failsafe_guidance_appendix2_codes_v2.pdf
