3 colps in 3 months, nothing matches.

Sorry for the long post but I’m feeling a bit lost, and pushed from pillar to post with all this.

I went for my first smear in Nov '16 (I was still 24 at time) all seemed fine except for some spotting after.
Two weeks later my results came through with high grade severe dyskaryosis and high risk HPV positive. I was sent for a colposcopy just before Christmas. The consultant diagnosed CIN2/3 and took three biopsies to confirm. He was also slightly concerned by the HPV positive result as I had received the HPV vaccine at college.

The result from my biopsies took about 6 weeks to come through as they were discussed at the MDM at the end of January, these came back with low grade cell changes with infection and inflammation.

Went in at the beginning of Feb '17 for a second colposcopy, where once again the consultant confirmed CIN2/3 and took some swabs even though he could see no evidence of infection or inflammation, just saying something along the lines of better being safe than sorry.

Swabs came back normal 2 weeks later. Went in for my third Colposcopy in March '17, had my smear repeated although this time I bled quite heavily during the smear and my consultant was a bit concerned by this. The consultant once again said he could see an area he said was CIN2/3 and that they would treat this area by removing it not matter what the results of my smear where this time, as he felt with my young age, the high risk HPV positive and the fact I have been on the pill for close to 10 years due to very heavy and painful periods that this was the best thing to do seeing as none of my results where coming back matching each other.

Today I got my repeat smear results and everything is clear still with high risk HPV positive.

Since having my repeat smear done and getting the results my consultant has retired and I am now under another doctor who I have never met and who has never examined me and they have decided nothing should be done, but I have also been transferred to a different clinic without being notified I only found this out when the letter arrived with an appointment for six months time at a different hospital. I have been unable to speak to my new consultant and the secretary I spoke to could only tell me what was in my letter and that I would be seen in 6 months time.

I know I am probably working myself into a bit of a mess over nothing as my latest results show no cell changes but I can’t help worrying as my previous consultant has repeatedly seen an area of quite pronounced cell changes. Even though this has not shown up on my repeat smear. He was still very insistent that this area is removed sooner rather than later.

I suppose I’m hoping someone has some advice for me, six months is a long time to wait to find out whats going on. Or if someone else has gone through a similar experience.

Hi,

I don't have any advice to offer but I'm going through a similar thing at the minute.. I had my first smear Feb this year and the result from that came back severe dyskaryosis which as pretty terrifying at first! 

I had a colposcopy appointment come through straight away, a doctor examined me and could see abnomalities, she took a biopsy and said it's likely that because I'm young and haven't had children yet they'd do cold coagulation to remove the cells. I got another letter 2 weeks later saying the biopsy came back CIN2 and an appointment to go back, I prepared myself to have it done on the day but when I got there she CNS said the report they had back from the histopathology lab said the sample was difficult to grade and suspected high grade which I'm assuming is CIN3. She said LLETZ was a more likely treatment which I was concerned about only because the doctor I'd seen the first time said this was more invasive and had discussed cold coag with me. She then examined me and showed me the pictures of the abnormal area, I was expecting a small patch but the only normal areas were the vagina walls, and she said it extended in to my cervical canal, she then wasn't happy to treat me without having a definite grade and a MDT meeting, and she felt I'd have to have a procedure done under general anaesthetic so took 2 more biopsies and a few pictures. 

I called the clinic after a couple of weeks and spoke to the secretary who told me I'd just missed Aprils MDT and would go on to Mays. A couple of days later I got the letter come through from the consultant saying that my biopsies came back with no pre cancerous changes which mismatches with my smear, the first biopsy, and what they felt on colposcopy, and that they're likely to treat me under GA to remove it. I've got an appointment to go back in may after the MDT meeting but at the minute I don't have a clue whats going on up there! I don't quite understand how the results can be so different!

I'm not too worried about having treatment at the minute but if they take a lot of the cervix away I'm scared I'll have issues trying to get pregnant and carrying a baby.

Sorry I don't have any advice to offer, it's comforting to know someone's going through the same sort of thing though?

x

I had repeated mismatches for 18 months (smears showed changes but nothing seen at colp, clear biopsies and lletz). I think I was pretty much a permanent agenda item at the mdt meetings!

Turned out to be CIN2 lurking quite high up which was removed by my 2nd lletz. 6 month smear is next week so fingers crossed.

My advice, because I know the waiting and waiting and not knowing is absolutely horrible, is that you've got no choice but to advocate for yourself - phone, write, request a meeting with the consultant to discuss in detail (I did this - he agreed to see me and really reassured me), go see your gp and ask them to write on your behalf (I also did this).

When you're worried about your health it's no time to be all British and quietly disgruntled, which is my usual character! It's hard, but you've got to ask all the questions you need until you're happy with the planned course of action and understand the reasons why decisions have been made.

Its difficult not to worry I'm trying not to think about it until after the MDT only a couple more weeks to wait. I hope next week goes well for you!