This journey has lasted 10 months for me so far and, although I was worried to begin with, I’m now just confused! I guess I was hoping that by posting my story others would share a similar experience and help ease my confusion/frustration.
Following the birth of my 2nd son in Febraury last year I had a smear test done on 1st April (advised by my Doctor). I was 26 years old. The results came back in May saying I had High Grade (severe) Dyskaryosis and an appointment with the colposcopy clinic had been booked for the 1st week in June. I attended the appointment and the doctor couldn’t see anything from the colposcopy examination so took a Biopsy but assured me it was probably nothing to worry about and in all honesty I have taken that advice ever since.
The results from the biopsy confirmed his diagnosis that there was nothing there apart from HPV changes. Due to the conflicting results by case was then referred to a multi-disciplinary meeting. I was called back in December to discuss this and then attended a follow up colposcopy appointment in January 2016. The doctor took a token smear test but we had concluded that, due to breastfeeding, my smear result following my pregnancy was probably distorted.
Well…my smear result has come back again with High Grade Dyskaryosis accompanied by the same sombre letter than I received with my first result back in April last year. I’m attending the colposcopy clinic, again, tomorrow but I’m not sure what more they can do? He can’t see any cells to remove on my cervix so I’m not sure treatment is even possible… Has anyone else experienced this? Could the high grade Dyskaryosis result be being caused by something other than the outer layer of my cervix?
Any thoughts/similar experiences welcomed. As I said earlier I’m pretty calm about the whole process but, due to risk of mis-informing the patience I presume, my doctor is very vague about what this all means and so I figured maybe you could enlighten me!
This is my first post on here :)
Sorry not providing answers... but I had a similar-ish experience. High-grade dyskariosis result from smear test in November. In December I went for a colposcopy and nothing could be found. The nurse suggested either they remove the area that is most commonly affected (as a precaution) or wait for a meeting in which the smear result would be re-checked, in case there was an error. I went along with that, and in January got a letter reconfirming the smear result and re-inviting me to a colposcopy. This time, the abnormal area was found and removed with LLETZ, and I got a letter just last week confirming CIN-2 and inviting me to come again in 6 months.
It was confusing that in that 1st colposcopy, the nurse (who seemed experienced) was puzzled that she couldn't find anything. I was almost sure there was a mistake. I felt surely they must have come across similar cases in the past!
November 2015 - Cervical smear, result: high-grade dyskariosis
January 2015 - Colposcopy & LLETZ. Result: moderate pre-cancerous abnormality (CIN2). No further treatement required, Next smear in 6 months.
Yes there have been a few of us on here recently with mismatching/discordant results. Its frustrating and annoying that it makes a lengthy process even more drawn out. From my understanding and experience, if you have mismatching/discordant results, they need to decide if the smear is accurate. They might take a second look at it, compare it to any further smears they have taken and see if they are saying the same thing. If you have tested positive for HPV, my understanding is that they will lean more towards the side of the smear being accurate and the changes just not showing up on colposcopy/biopsy. The reasons I have been given for the changes not showing up on colposcopy/biopsy are that 1) the changes are further up than they can see on colposcopy or access with a punch biopsy, 2) even high grade changes can heal on their own, so the smear may have caught you in a stage with high grade changes, and the colposcopy/biopsy when it has healed somewhat. My case, I had two lots of mismatching smear and colposcopy, positive for HPV, went to LLETZ anyway without knowing where changes were. I think they did like a cone biopsy with the LLETZ, so they removed two parts, both at the surface of the cervix where they usually do, and further up. I got a results letter just saying that they found precancerous changes as they knew were there from my smear, and that it was all removed. It did not say what level of changes or if it was in both parts of tissue they removed, or any other details. I have been ringing to trying find out, but so far have had no luck getting hold of the colposcopy nurse to get this information.
Good luck with you next appointment. Hopefully they offer you a LLETZ treatment anyway, its good for the peace of mind.
Hi Kitty, my situation is almost identical to yours and with similar timeline - so far two smears have shown high grade dyskariosis but two colposcopies/biopsies have shown nothing. I'm still waiting to find out what was decided at the mdt meeting 10 bloody days ago and holding out hope that they're going to go for a lletz or cone as don't think I'll relax until they can tell me for definite what's going on.
Let us know how you got on on Monday, it's really helpful to hear other ladies' stories and whatever decision they've made for you I hope it's helped to put your mind at rest or offer you some answers - the not knowing what's going on really does seem to be the worst thing about this process at the moment.
Sending hugs xx
hi kitty im very confused with mine also had smear all others came back normal except one in October had letter high grade dyskariosis had colpocopy 2 weeks later couldnt see anything so did biopsy that came back warty abnormality thats all it said with a 4 month check up for smear and colposcopy which is next week im so confused would my smear test had been wrong or could it be further up in the canal where they cannot see at colposcopy its so frustrating see what happens next week said i need smear and colposcopy at same time x
I've got a similar situation. Had routine smear December 2015, all previous smears had been normal but results from this one came back high grade dyskariosis (moderate) so was referred for colposcopy 22nd December. Consultant here said she could only see a small area of changes, that it didn't excite her much (her words), didn't even look like cin one, but would take biopsy anyway. 3 weeks later I got results of cin 1, 2 & 3 changes so was booked in for loop diathermy on 2nd February. Got the results from this on Saturday which say "no clear evidence of cin or changes in the cells in the canal of the cervix". So now, due to smear and biopsy results, my case will discussed at the specialist meeting on 10th March. I think this is good news really but still slightly concerned as still no clear idea as to what is going on. I rang the clinic to ask why I could have had conflicting results and she said that they will look at all the results together at the meeting, that it could be that all dodgy cells were removed in the original biopsy or I may need the treatment again. So it's a waiting game now to see what they decide - just so confusing as would have really just liked the letter saying clear margins, follow up smear in 6 months.
Anyone else had this? Was all removed in original biopsy or were cells with changes missed and repeat treatment needed?
Hi, I’ve had a similar situation.
Had my smear test on Feb 7th this year, and was invited to an urgent colposcopy on Feb 20th. The consultant told me my sneak test picked up high grade severe abnormalities and that they were going to take a biopsy during the examination.
At the end of the examination and biopsies, the consultant showed me the images from the colposcopy and the area of abnormality picked up by the dye. She said she believes the biopsy will confirm the smear test and that I will need LLETZ treatment under general anaesthetic as the area is too large to treat under local (She also said the area was so large she may not be able to get it all under general!).
Ive been waiting for 3 weeks for further news and I’ve just had a letter from the hospital saying....
”thanks for attending your colposcopy with high grade severely dyskaryotic smear. Colposcopy impression was of high grade abnormality with some inflammation. The biopsy has just shown inflammation. I am requesting a review of your smear test with our lab team and I will write to you with my recommendations.”
Has this happened to anyone else? What are the options for next steps? How is it possible that my smear and visual exam give the same impression but nothing shows up on the biopsy?
im so confused! X