2nd abnormal smear/colposcopy....reality check needed!!

Hi everyone

Spent a while reading through a lot of the posts on here, what a fantastic forum! Some lovely people on here....Smile

My history should come up on my signature (this is my first post, so not confident of that but will add if it doesn't!) but, bascially, I got the results of a 1 year follow up smear yesterday showing 'low grade dyskaryosis' and postiive test for HPV. I'm waiting for the Colposcopy appointment. I had exactly the same a year ago, and nothing could be found to test at the Colcoscopy.

I panicked when I opened the letter, but researched it a bit more and managed to rationalise it. I was fine after that, a bit drained from the panic/anxiety but actually feeling quite chilled about everything. That was quite amazing as I've been battling anxiety problems for a while thanks to my (former) job but my experience last year did help me. I was a complete mess then....

So there I was patting myself on the back about how far I'd come in a year and then I spoke to my cousin.... She's a doctor, but an ED (Emergency Dept) doctor and maybe 10 years out of date on this sort of thing (when she went through the same). She said once you have HPV, you've got it for life, even though that goes against what every reliable source is saying now. Still, she managed to freak me out a bit!!! She did say she wasn't worried, and if it turned out to be anything really to worry about she'd 'eat her hat', but as as far as I know she doesn't have a hat.  Tongue Out 

Joking aside, it's difficult to be reassured by that as she didn't seem to know as much about it as I did and her view is that there's no point worrying until I get the results of the Colposcopy.

So I thought I'd see what you all thought about the things I deduced from my research that made me feel OK about it yesterday......and see if any of you had any thoughts on some questions I have. At the very least, I thought it might help someone else to cope if I shared my story and what I've found out on here!

Firstly, I was reassured that they couldn't even find anything to test a year ago. From what I've read, CC takes years to develop (generally 10-15, hence the effectiveness of the screening programme and the intervals) so I figured the chances of it actually having progressed to CC in a year were negligable. That, of course, assumes the Colposcopy was thorough, but the Doc said she'd had a really good look around when she couldn't find anything to start with.......

Secondly, the smear has shown 'mild dyskaryosis' which I understand are slight changes. The letter I got suggested these could simply be caused by the HPV, and I've seen some posts on here where ladies' results have shown only viral changes so I presume this is different to 'pre-cancerous' changes? I'm guessing that's why they couldn't find anything to test last time, and even if they do this time it could still just be viral changes?

I realise it's entirely possible, even if that is the case, that things may have progressed and they'll find something to test this time. I also see from posts on here it's not guaranteed they will only find mild changes, although it looks like it's often the same as the smear. One of the things I've been trying to establish is how likely it is that it could come back as severe changes? (and thus quite likely to develop into CC if not treated)

I've read that treatment is almost 100% successful, even if it takes a couple of goes, and I really don't care how much treatment I need if it's going to sort it out. In fact, I found guidance from the European Cervical Cancer Association called 'Everything you need to know if you have an abnormal smear' (not sure if they'll let me post links on here?) which said studies have shown HPV normally goes away within 12 months of treatment (presumably only if they get it all, though). That seems to be reflected by some of the stories on here where people test clear of HPV after they've had treatment. So in a way I hope they do find something to zap to give me a chance of it going away! I know cell changes remain a risk as long as you have HPV, and I obviously haven't managed to kick it in the past 12 months (although I was a smoker up until 5 months ago, which may factor into it).

So, what do you think? Am I being realistic, or deluded? I know there are no guarantees, and my cousin is to some extent right that there's no point worrying until you know if there's something to worry about (ie until the Colposcopy results) but being deluded really isn't going to help in the long run as I won't cope with news I'm not prepared I could get. To make matters worse, I'm here on my own - my fiance works away during the week - and I'm on antibiotics this week that mean I can't have any wine! It's the first time I haven't drunk in the evening for more years than I care to admit, another reason I was patting myself on the back for how well I coped yesterday!!

So sorry for the extremely long post...but thank you to anyone with the perseverence to get this far!!! I actually feel better already for getting it all out!

C xx

 

Hi 

 

i just wanted to let you know that you are not alone. I have just had a high grade dsykaryosis result after years of normal results. I am a nurse ( mental health) you wouldn't think it with my anxiety levels at the moment ;)  I don't know much about hpv virus but I'm guessing I have it hence my severe result????i am told they will test for this at my next smear (if my results show I can return to 6 monthly smears) I know a few people that have had mild or moderate changes (all good outcomes)but no experience of any severe results. I have had my colposcopy & lletz treatment (12th July) but have no results yet & will admit that I'm terrifiedHowever if I could be rational at present I would take comfort in reading the posts on here & of how common these results seem to be. There seem to be so many people who have cin 3 changes who have successful treatment with llezt & returned to regular smears. It doesn't stop your mind wandering though & unfortunately the human mind seems to think of the worst possible outcomes & torture us!!i am a smoker :( & have found it difficult to stop whilst so anxious but I also know how much I am risking my health & intend to try my absolute best to stop if my results are ok...I also drink wine most nights & will try to cut this down too as I know I am doing my body no favours (but it seems to help in the short term!!) I guess what I am trying to say is you are definitely not alone & although its so scary the outcomes are rarely bad especially for mild changes. Hope this helps & good luck with your appointments xxx

Hi Boo Chops

Thank you for taking the time to reply. For some reason, I wasn't notified when you posted this, but wanted to reply hoping you'll be notified of it.

 

My colposcopy was clear, nothing to test. That's the 2nd year this has happened now, and I'm told it's likely to happen again - I guess unless I manage to kick the HPV by some means!

 

Regards the smoking, I gave up using e-cigarettes. Would highly recommend if you haven't managed to give up by other means yet!

 

Hope all continues to be well for you....

C xx