I was recalled early by my GP for a repeat smear in October 2015 as the nurse who’d done my test in April 2014 was training and their technique may not have been able to give me an adequate result (although the test result from the lab came back normal). I had a test in November 2015 which came back as moderate dyskariosis.
I was referred for a colposcopy which I had exactly 2 weeks after my smear test. At the appointment the nurse said she could see a small area that may have accounted for the abnormal result but didn’t want to treat it so took 3 biopsies and the biopsies came back as viral changes. Because of this my case was referred to their MDT meeting where my original smear test was reviewed and it was agreed that it definitely did show moderate changes but not a huge amount but also that the biopsies were quite scanty samples and one was inadequate. They advised a repeat colposcopy and further biopsies in 8 weeks time.
I went back in Jan where I was seen by a different nurse who took 2 further biopsies. They had a camera at the clinic so I was able to see it both times (lovely!!) And second time around it looked worse to me but I’m not a nurse.
These biopsies again came back as viral changes only so I’ve been discharged back to my GP to do a repeat test in 12 months.
I just can’t put it to the back of my mind for 12 months so wondered if anyone else was in the same boat. I can’t understand how a smear test (which was looked at in the lab & by the MDT meeting) can say moderate, both nurses thought it was CIN1 & expected biopsies to agree yet biopsies show viral changes only. Where have the moderate cells gone so quickly?!
I was never tested for HPV since my referral smear was moderate but the nurse said it was likely I have it as my biopsies showed koilocytosis but obviously no idea if it’s high risk or not. I’ve been with my husband for 9 years & there’s no concerns around being unfaithful so its likely I’ve had it for a long time if I do have HPV, therefore not sure it’s all that likely to go away in a year.
I’ve contemplated going private to get one at 6 months but don’t want to be ridiculous, equally can’t shake off the niggling feeling something got missed. Even if I just knew my high risk HPV status that would either put my mind at rest or at least mean I’m more aware of any symptoms etc…
Does anyone know if your next smear is 12 months after the first one or after the discharge from colposcopy date? My two dates are 10 weeks apart (over Christmas) so would rather it be the soonest date, does anyone also know how early you can have one? I know at my last routine recall they could do it after 2 years & 6 months rather than having to wait until the full 3 years
If anyone has any advice I’d be really grateful, nothing adds up so don’t know what to believe!.
I have had a similar situation where my biopsy was inconclusive, they said my cervix looked healthy but my repeat smear showed CIN2/CIN3 and I was referred to MDT, they downgraded my smear results to nuclear cell changes and told me they would see me in 6 months. I felt exactly the same as you, so I went to my gp in tears. My gp faxed the consultant who rang me back immediately and I discussed my concerns with him. He agreed to check me in 3 months instead of waiting 6months in light of my differing results. When I went back my smear and biopsy showed CIN2/3 again and he agreed that when they downgraded it, it may not have been right.
So my point is, if it doesn't feel right then speak to your consultant, if you push hard enough you may be able to get them to agree to a 6 month check instead of 12 months just to put your mind at rest. Remember it's your body and your choice, if they won't do it then I would consider looking into private referral.
I had a possible high grade squamous intraepithelial lesion pap smear which looked high grade at colposcopy, but 2 biopsies came back inflammatory changes with no evidence of cin, hpv or cancer. I have follow up colposcopy in May which is 6 months from original colposcopy. I still have doubts that everything is ok. The dr did say they could have missed the worst area's during biopsy which is unsettling to say the least. I have now been bleeding for 6 weeks. I had an internal exam done and they said besides an erosion my cervix looks ok. I also was on depo ralovera which ran out 2 weeks ago that could be causing my issues
Thanks everyone for your advice & input. I phoned my GP & spoke to my GP who was next to useless (to be fair this is not his area of expertise!) although he wasn't even able to tell me when my next test was due, surely that's on their computer system somewhere. I think a nurse would have been more useful & even said that to the receptionist.
I know it sounds stupid but if my next test is due Nov & I can get away with having it done a few weeks early then I can live with that as its already been 4 months since November so only about another 6-7 to wait. If they insist I have it in Jan & no sooner then it's more than 10 months which psychologically is a massive difference. The other thing is we are trying to start a family & my GP said they definitely wouldn't do a test if I was pregnant, therefore if we are fortunate enough to conceive over the next few months then I would hopefully be pregnant by my next test & I really don't want to delay it for up to another 9 months.
I really don't know what to do next as just feel like I keep hassling people but can't seem to find out anything helpful. Ultimately I just want to know when my next test is due & how much sooner I can have it so I can decide if going private is worth it or not. The thought of leaving it for another year (possibly more depending on pregnancy) to find out it's had a year to get worse is stressing me out!
Thanks for all your help everyone. Nice to know I'm not just being a total hypochondriac!
Decided I'm going to phone my GP again & specifically ask to speak to the same nurse who did my test & who I spoke to when I was originally recalled by my surgery, she had all my previous test results info so assuming she can help.
If my next test can't be done until Jan & they definitely won't do it if you are pregnant then I'm going to look into getting it done privately While we're still trying.
Anyone have any idea of where to go privately? I've done a bit of research & the cost difference is huge but well over £150 so far.
