Abnormal colposcopy again - any experience? Please help me decode this

[IWantOffThisMerryGoRound]

I had an abnormal smear 2 years ago that showed high grade severe dyskaryosis and HPV.

I was sent for a colposcopy where abnormal cells were confirmed under the scope and a biopsy taken. The biopsy result showed CIN1, so only mildly abnormal and not high grade or severe as the earlier smear indicated.

They brought me back in for another colposcopy after 6 months (due to the HPV) and the abnormal cells were no longer visible. Hooray. They took a smear to see if I still had HPV.

That smear came back as HPV positive, and abnormal cells again - even though none were visible under the scope.

So they brought me back in after another 6 months which brings me to today. Today's colposcopy shows that there is now visible cell changes again.

She commented that she can "also see a patch of HPV"

She said she wouldn't take a biopsy as it would be difficult (I think due to the location of the cells being inside the cervix) but she'll take a smear and those results will determine what happens next.

I've left the hospital increasingly worried. From what I understand, HPV isn't something you can see, so what is this patch of something that is seperate to the cells inside the cervix?

I'm also worried about the smear results being used to determine what if anything happens next because the smears are not accurate enough, in my experience and opinion. I know that a lot of people have received inaccurate results. I would feel a lot more reassured if a biopsy was scheduled, even if it needed to be done under a general.

How can she see HPV when it's invisible? Could this patch, whatever it is, be cancer and has it been missed on the last colposcopy and growing all of these months? Are cells ever missed during colposcopies / how could my last one show nothing but today's shows all of this?

The lady I saw today is a different person and not the doctor I've been seeing for the past 2ish years.

Anybody with any experience would be very welcome. I'm a rational person for the most part but seem to have latched on to the one part of the findings that makes no sense to me.

I've got it in my head that it might be CGIN due to location (inside the cervix and not on the outside) and therefore the last colp missed it, and it's been slowly getting worse without treatment 🥺

No experience OP, but commenting to bump it for you. Best wishes, and I hope you get answers soon xx

Ring the department, and ask for the doctor who performed your most recent colposcopy to phone you to explain the findings and her recommendations.

Ask the experts OP

Yes I agree with others

this is a situation that has gone on for 2 years and seemingly you have never had anyone sit down with you and explain the results (just a letter that’s not designed for you to properly understand) in plain language.

you need to get in touch with the consultant you are under or the department who are sending you for these repeat tests and ask for an appointment to discuss the results of these tests.
id also be asking apart from these tests to keep an eye what treatment is appropriate to actually deal with whatever is going on because from your point of view you have been going for regular invasive tests for 2 years with no treatment and no real clue as to what is actually going on with you.

im not a doctor but I would hope that as this is a situation that has been ongoing for 2 years that this isn’t something to panic about like a fast growing cancer etc.
obviously I don’t know anymore than you but this is what I’d be telling myself while I chased up some answers from the professionals if I was in your situation.

Did you not ask the expert if you saw her today?
Sounds worrisome.
I ended up having a hysterectomy due to this 0/10 do no recommend

Thank you for the replies. I think I will try and get a message to the doctor that I usually see there and ask that he considers scheduling a biopsy based on today's observations. I don't have a direct point of contact but I'll call the unit shortly.

I didn't fully process the exchange I had with the female doctor until I left, at which point it was too late to ask any questions.

I did ask her if she could grade the changes based on the visual under the scope and she said mild, but that's just what she can see iykwim? I'm worried about what's further back.

I'm assuming she is a doctor, can colposcopies only be performed by doctors? She was wearing the same scrubs as the nurses on the unit if that's any indication.

I'm by no means suggesting she isn't well informed and capable, I'm just thrown by the patches of HPV remark as it doesn't make any sense.

What was the process in the lead up to your histerectomy if you don't mind me asking? Does my experience ring a bell for you?

I wouldn’t panic.

Medical staff do sometimes use the wrong language in an attempt to “dumb down” what they are saying. I would strongly suspect she can “see” cell changes caused by HPV, not HPV itself.

It is incredibly unlikely that cancer has been missed, the cell changes are typically associated with HPV infection and aren’t necessarily “bad”.

I would certainly ask for clarification but I also see no reason to leap to cancer.

I yoyo between HPV positive and negative and I know it’s frustrating!

Thank you, that's reassuring to read and it makes sense.

She was talking me through every step during the examination so perhaps you're right and the language was intended to be easily interpreted for those of us who aren't medical.

How long have you been having HPV positive results if you don't mind me asking? My first smear at 25 was clear with no HPV detected but since it showed up on my second smear age 28 I can't seem to get rid of it 🤦🏼‍♀️

I've been looking at all of the guidelines and I'm really not happy that I've left today with no plans to have a biopsy in place. If abnormal cells are detected during the colposcopy the next step is to biopsy not just perform a smear test 😕

I'm going to ask for one but don't hold out any hope, it's practically impossible to actually speak to a hospital doctor over the phone or email.

Hi OP, you can see where the cells infected with HPV are when the dyes are applied during the colposcopy. That’s how they know where to take the biopsy from.

Definitely call your doctor and ask them to explain, but when I had a colposcopy the person doing it let me watch the screen and showed me the yellow pach of the HPV virus "sitting on my cervix" - I imagine that is what they were referring to with you as well. I had a biopsy taken at my colposcopy too since she could see the HPV patch.

Try not to worry too much - easier said than done. It was years ago now, prior to routinely testing for HPV, but my understanding from my consultant was that the changes occur slowly, usually with years between stages, so I think the leap to cancer is premature.

I had an abnormal smear aged 25 following initial pregnancy and birth - colposcopy CIN3 - loop excision.

Normal smears for next few years, including following my second birth, just prior to moving country.

Then a few months later in new country, they smear tested routinely at about 12 weeks (3rd pregnancy). Abnormal smear only 5 months after previous clear result in UK! Colposcopy performed with biopsy - all abnormal cells determined to have been removed by the biopsy.

2 or 3 years later, abnormal smear again, back home in UK. I asked my consultant for my options, and he said we could either colposcopy with loop excision again if necessary or a hysterectomy to remove cervix. I opted for the hysterectomy, which was done within a couple of weeks, as fortunately I had private health insurance.

HPV can cause white patches on the cervix because of deposits of Keratin in the cells.

I had CIN 3 and a Llets procedure. Then annual smears for 10 years. I'm now back to 3 yearly. I went on to have 2 children. Although, because of the severity of the lletz I had cervical scans to measure the length regularly and progesterone. I went to full term.

I had HPV in my very early 20’s before it was tested for in smears (I had genital warts).

Then when HPV was first tested for in smears I was negative for 1, then positive, then negative for 2 or 3, then positive again, most recent negative. I’ve had 2 colposcopy’s with biopsies taken.

I cleared it within a year both times but it still comes back randomly.