I'm feeling really anxious about significantly conflicting colposcopy and biopsy results - from googling (I know I shouldn't google too much!), this doesn't seem too commonplace, so now I'm imagining incorrect biospy result - maybe mixed up samples in the lab?! Brief timeline below:
Smear Nov 2017 - abnormal
Colposcopy Jan 2018 - biopsies confirmed CIN I
Follow up Colposcopy September 2018 - Colposcopy diagnosis = CIN II, but biopsies came back normal
I know I should be relieved by the normal result, but the clinician was certain it was CIN II during the colposcopy and told me about the LLETZ that I'd need to have 'once the biopsy results confirmed this'. I can understand the biopsy results maybe coing back CIN I, but mistake normal cells for CIN II seems a little far fetched? And from google, CIN II seems visually quite obvious/hard to mistake with normal cervixes? Has anyone had a similar experience? I'm so torn between just taking comfort in the normal biopsy reult and not being paranoid about this, or whether I should be pushing for a follow up asap. I'm already losing sleep/apetite, so not sure I can wait for a 6 month follow up...
I had a similar experience very recently, I'm 37 and have always had normal smears up until September of this year:
June 2018: Inadequate result
Sept 2018: Very rough & uncomfortable smear which came back "Borderline endocervical cells"
Sept 2018: only 10 days after smear I was fast tracked for Colposcopy where I was told that I was HPV positive and that the smear showed abnormalities in the glandular cells which is less common. She then had a good look and said "hmmm I'd say this is definitely a CIN 2/3" she then took a punch biopsy.
October 2018: After almost 2 weeks the anxiety of the results was consuming me, so I gave the hospital a call. The nurse read my results to me over the phone. Apparently the biopsy showed inflammation only and no CIN. I go back in 6 months for another Colposcopy.
I completely understand your worries and I have actually considered going private in a few months for a second Colposcopy as the colposcopist was certain of a high grade change! Maybe they can't tell the difference between inflammation and CIN? Bit worrying!
Hmmm, I don’t want to alarm you, but to make you aware, your result was exactly the same as mine with the first LLETZ. After this result and a review of my histology went to a MDT meeting, they recommended to go in much deeper with a second LLETZ. This resulted in deep CIN3 being excised.
Everyone is different, but if you’re not happy with how your case is being managed, first contact the colposcopy unit and ask to explain why they’re not investigating this further with another deeper biospy. If you feel you’re unable to do that on your own, or have done so already and not satisfied, then contact PALS (Patient Advice and Liason Service). They can give advice and/or liason with the medical practitioners on your behalf.
Thanks for your reply, Kate I'm also now very tempted to go private, if only to stop the overthinking/anxiety. They didn't even say inflammation in the biopsy results for me, so I am worried that somethined just doesn't quite add up...
Just to follow up, I spoke today to the clinician who carried out the colp - i.e the person who was certain that there was CIN II present. She said that even though the biopsy came back normal, she wants to follow up with a loop procedure incase the abnormal cells are inside the cervix (biopsies only can be taken from the outisde, so can't represent the inside), and only the loop can detect any abnormalities inside the cervix. Hoping this is just the clinic being nice and thorough, but thought I'd mention as I second Jools - it could be worth following up on the normal result with the clinician themselves.
Thanks, Jools - I have the doctor who did my colposcopy calling me back on Monday as I expressed my concerns!
Did you have any symptoms at all? I haven't had any abnormal bleeding and periods are always on time. Also, apparently they don't have anything on my smear lab results which says I tested positive for HPV and on my biopsy result it just says "HPV not identified" so no idea what that means?! This is the letter I got from the colposcopy clinic:
I had the pleasure to see you in my colposcopy clinic on 25th September when your recent smear test showed borderline endocervical cells and HPV positivity. During the colposcopic examination I saw quite a large ectropion, and the biopsy I took from this has been reported as showing acute and chronic inflammation only. However, in consideration of the fact that my clinical impression was of a higher grade of abnormality, I recommend that you return to the colposcopy department in six months for a repeat smear and colposcopic assessment. Please do not hesitate to contact us if you have any questions or if there is anything you would like to discuss in more detail.
So I spoke to the doc who did my colposcopy and she has booked me in for Dec 17th (in 3 months rather than 6) as I said I was worried she hadn't taken more biopsies.. She said that she wasn't required to take more than one and that's "common practice" I hope I don't get her again :( I'm also still waiting for her to confirm with the lab whether they actually tested for HPV as there's no mention of it anywhere in my lab results.
Frustrating as I'm still not able to relax because I don't have answers! You must be feeling the same? Have you had your loop biopsy yet?
