Confused and frustrated

Hi!

I'm just after some advice from others who have been in the same position as myself. 

 

I wasn't sure if I should post this in the screening forum or on here, so I hope no one minds if I'm in the wrong place!

 

I've just had my 6 month follow up smear after having LLETZ in August last year for CIN2 or CIN3 (the clinic refused to tell me but I managed a peek at my notes!).The results came back normal but positive for HPV so another Colposcopy is needed.

 

I understand HPV must be monitored and have no intention of ignoring it, I know I am lucky my test came back ok.  I'm frustrated that my smear, biopsy or the area removed from the LLETZ was not tested in the first place, I'm only 25. When I questioned the gyn clinic about this they didn't seem to know what they were talking about, I got the excuse that they only started testing in April 12 (smear in May, biopsy in June and LLETZ in August?!) that and constantly having to chase results and appointment letter; has left me with little faith. 

My confusion is that although my smear is normal I still have to have a colposcopy. I struggled with the first two and I now freak out just having a normal smear! (I'm a massive girl!) Is it likely that they won't find anything at the colp. and then get told to have another smear in 6 months and then potentially get stuck in a never ending cycle. I would have presumed as it is normal but HPV found would mean another smear in 6 months to monitor for changes? If the colp. picks up any changes I will be treated but where do I stand if it doesn't? I just wait for the changes?

 

I do understand I am lucky to have a normal result and I am not taking it lightly. 

 

Any advice would be greatly appreciated 

J x

Hi,

Unfortunately there does seem to a lot of confusion in some areas around HPV testing. It's being gradually phased in and I guess some areas are more on the ball than others. (Mine isn'on the ball either so I can sympathise with you.)

The screening service is now using the HPV 'test of cure' protocol. There is the info on the NHS screening website. If you look under HPV you'll see something a link called test of cure, and then you can find the  'test of cure protocol flowchart'. As you had CIN2 or 3 last time, you've been referred for colposcopy as you've had a HPV positive smear. It's worth asking when you have the little consultation before the colposcopy what will happen if the colposcopy is clear, if you'll be returned to routine screening or how they'll manage you. As for treatment, it looks possible if any abnormalities shows, although I hope the examination will be normal for you. 

I can also understand what you're saying about smears and colposcopies. I also struggle with them, and I tell them this and ask for a small speculum. 

I hope this helps, and that you get your appointment soon. I wish you all the best x

Thank you Twilight12 :)

Whenever I have asked them questions in the past i'd always get brushed off or they skirt around the answer.

Guess I'm also a bit concerned about returning to normal screening too, the HPV was verly likely tp have been there on my first smear almost a year ago and it's still there now. I don't have the best immune system so I have a feeling it won't be going anywhere soon! I'm worried that going back to a smear every 3 years something more sinister may be picked up rather than just CIN.

I should have more faith in the system, I just can't help but worry. (Like many others I'm sure)

Hi there, 

Just wondered if you've had a date for your colposcopy?

I totally understand why you feel as you do about worrying. I think that also when you have less than positive experiences with health professional it's harder to have total faith. As you say, you've found it hard to get them to answer questions, and I think that makes the confusion worse because you can start to wonder why they won't answer. I've also had bad experiences with the screening service and do understand how it knock your confidence.

Hopefully if the colpscopy doesn't reveal anything they will at least see you in 6 months or a year. I', personally very uneasy about this using HPV test to decide how to monitor people. Before this, everyone was seen yearly for 10 years. At least with a yearly smear you know you're being looked after.

Hope you're doing ok, take care x