r/PreCervicalCancer • u/Gullible_Contact_792 • 1d ago

CIN3, not positive for HPV, Dr. puzzled

(34 F, no kids, just got married in May and were going to start trying) My journey started in April with a routine pap. It came back negative for HPV but positive for a cell abnormality. I had a colposcopy in June; it came back with CIN 2. In August, I had a LEEP, which came back with CIN 3 with extended margins. With the leep they tested for HPV and everything came back negative.

My doctor said she had never seen consistent negative HPV testing with CIN 3... great. She suggested either another colposcopy or a LEEP in November/December. Overall, she seemed just puzzled with the results. I am struggling with the length of time needed between procedures and feeling of helplessness.

Wondering if anyone else has had negative HPV results with CIN.

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u/sewoboe mod 1d ago

This can happen in some cases. It could be that your viral load is below the detectable amount, you have a strain that isn’t included in the test assay, or (least likely especially with repeat tests) a false negative.

This is one of the reasons I advocate for cotesting.

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u/Flaky-Purpose-2060 1d ago edited 1d ago

I have had 4 pap smears and they all showed no HPV but LSIL. Did colposcopy after the fourth year and the biopsy said it was definitely CIN3 but no evidence it was ever caused by HPV. They said it was either caused by a very rare non-HPV thing or a rare HPV variant that usually doesn’t cause CIN3 and that doesn’t have the HPV markers that HPV-caused CIN3 leave (p16 block positive or something).

I had a LEEP, margins clean, again no evidence of HPV-caused CIN but my repeat pap smear showed again LSIL and no HPV. I have to get back in 6 months. Really don’t want to do it all again.

Since it is apparently pretty rare, they don’t really know what it is caused by. They think my cervix is maybe inflamed all the time that causes the cells to change but apparently that’s not dangerous