No cell change to Cin3

Cervical screening results
1

Hello!

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.
I am definitely all over the place and finding it all hard to process, how no cell changes showed on my smear and around 4 weeks later they see CIN3 on my cervix.

Has anyone else experienced this?? Did the biopsys turn out to be nothing?? Could see it all on the photos she took.
Were you ever able to trust a smear again??

Thank you for reading xx

X

2

Dear Kiki,

seems similar to my story (37yrs from Germany)

  • annual smears since I‘m 16yrs old, never had any abnormalities (called PAP I in Germany)

  • after the birth of my second child, the guidelines for cervical cancer early detection changed. Once you turn 35 you have a co-testing for HPV virus plus the regular smear

  • the result came back - HPV16 positiv, no abnormal smear, same thing 6 month later (I even choose a „thin prep smear“ and 12 month later again, HPV positive but no abnormal smart

  • As we have the new guidelines in place and I‘m HPV positiv after one year, next step was a colposcopy. The doctor told me there are a few areas looking conspicuous, but the whole time I was thinking „maybe some issues from giving birth twice, no problem, all smears were clear“

  • Doc took three biopsies, came back within a few days - CIN 2 (with the comment, that there are CIN 3 changes at the borderline)

  • Few weeks later I had the conisation, waiting for the results was horrible - it came back CIN 3/ Carcinoma in Situ - luckily it was removed in healthy tissue, so for now that‘s it, fingers crossed!

  • I was completely shocked the whole time, still can‘t believe all the smears haven‘t shown ANY irregularities at all

  • The Doc who did the conisation told me, that this happens to about 16% of the women who have been tested positive for HPV

So I do not fully trust in smears anymore, the HPV test seems to be a good indicator, I will always do co-testing from now on. Hoping my next test will be HPV negative.

Fingers crossed, they have seen something else in your case or just minor changes!

Please feel free to contact me, if you have and questions. I just had my results 3 days ago.

xxx

pulaurawa

1 Like
3

Similar situation but with CIN1 /2. I had a smear in Sept 23. Came back high risk HPV, no cell changes detected and put on 1 year recall. referred for colposcopy in Jan due to me going back and forth to drs with abnormal discharge (for 9 months) and recent bleeding after sex.
Colposcopist wasn’t concerned. Could see tiny patch when the liquid was added and said if the biopsies came back as inconclusive, they weren’t concerned and would discharge from colposcopy.

It’s been confirmed via a short update letter as CIN 1 with CIN 2 not excluded. Still awaiting final results/next steps but they won’t come in until after the MDT meeting this week.

Like you I’m concerned it wasn’t picked up if it was there when I had my smear and if it wasn’t that it’s developed quickly!

Hope you get answers/reassurance soon.

4

Thank you for replying!! Yes i didnt get high hpv until after birth of my 3rd child.

Its a scary thing to think, like how long have these abnormal cells been there, why weren’t they picked up :sleepy::sleepy:. Just gives me the worst anxiety of has it gone too far and now im waiting for the dreaded word. Im hoping and praying it isnt, and it can be taken away like yours.

Wow 16% thats crazy, what procedure did you have? Also what happens from now on, if we get another high hpv will they still just stick to smears?

Im so glad yours came back and was able to be cleared. Thank you so much for messaging :heart:

5

Yes thats exactly how im feeling.
Why was this not picked up? Whats going to happen in the future because of this. And also did it really just grow that quickly within 4 weeks!!

I am still waiting for my results, and with painful sex, abnormal bleeding, abnormal discharge, pains in pelvis and back. I am so so worried and expecting to hear the horrible word. But I keep trying tobstay positive and stick with that the worst will be CIN3 and can have it removed. But its so so hard!! Its been 19days since the colposcopy/biopsy. I think i was just caught so off guard that i cant stop freaking.

I really hope you get your next steps soon, even having to wait for a procedure is horrible. Thank you for messaging me :heart:

6

I know, how hard the time waiting for results is - I‘m very lucky, I only had to wait one week for the results of the conisation and my gyn even called me on a saturday as I worried soooo much.

I assume we have the virus for decades (maybe laying dormant) and during pregnancy (two pregnancies in a short time in my case) as well as other mental stress, it was easy for HPV to develope further or changes that have been there speed up as the immune system is weak.

The „funny“ thing is, I was thinking about having a private colposcopy/biopsy last year when HPV was detected for the very first time - I was really worried in the beginning. But then I read almost everything I could find plus all the infos here in the Forum and I was sure, the virus is just active due to the weak immune system, but without and cell changes as all the smears came back clear. I had many blood tests and took plenty of supplements and vitamins, spent lots of money. And I had three smears in 18 months (to have some Kind of reassurance) and all came back clear - I did reseach how it can be, that smears come back all clear but in the end just a few weeks later the results of the conisation (LEEP) turn out to be a carcinoma in situ.

My hypothesis, why the smear hasn‘t shown any changes: the HPV virus is in the basall cells and not on the surface of the mucous membrane what I have thought all the time. Changes start down in the basall cells and then go up to the „surface“ and maybe the thickness or solidity of the mucous membrane varies from women to women and sometimes the cell changes haven‘t come to the surface yet.

The LEEP with anesthesia was easy to manage for me, I didn‘t have any issues.

In the end all this doesn‘t matter - the point is the immune system. I booked the next smear + HPV test in three months. In case I‘m still HPV positive, I would consider a Hysterektomie as I don‘t want to worry all the time. But the regular procedure in Germany would be another LEEP if cell changes occur again.

In case HPV is gone, I might consider regular smears and HPV testing as the risk in this area is almost gone, when the HPV infection was „catched“ by the LEEP.

Maybe your pain, discharge etc. comes from the biopsy or did you have all the Symptoms before?
I assume when biopsy results show CIN 3 then it should be it or maybe the same result I had, which normally can be fully removed with LEEP.

The time waiting for the LEEP results was the worst time I had in my entire life. I can totally understand how you feel, especially with this scenario and having children you are responsible for and want the best for them.

All the best for both of you, try to think positive as invasive cancer is still rare and CIN 3/ carcinoma in situ is much more often detected and fully curable.